PositiveLiving A MAGAZINE FOR PEOPLE LIVING WITH HIV l WINTER 2014
Is the PARTNER study a
GAME CHANGER? AIDS 2014 • BIG PHARMA BIG PROFITS • TESTING POSITIVE
PositiveLiving THENEWS ISSN 1033-1788
EDITOR Christopher Kelly
David Menadue Beadle, Jules Clancy, Jae Condon, Alex Mindel, Dr Louise Owen, Stephen Watkins DESIGN Stevie Bee Design
Positive Living is a publication of the National Association of People With HIV Australia.
Positive Living is published four times a year. Next edition: September 2014 Positive Living is distributed with assistance from
SUBSCRIPTIONS Free subscriptions are available to HIV positive people living in Australia who prefer to receive Positive Living by mail. To subscribe, visit our website or call 1800 259 666. Contributions are welcome. In some cases, payment may be available for material we use. Contact the Editor. ADDRESS CORRESPONDENCE TO: Positive Living PO Box 917 Newtown NSW 2042 TEL: (02) 8568 0300 FREECALL: 1800 259 666 FAX: (02) 9565 4860 EMAIL: firstname.lastname@example.org WEB: napwha.org.au
n Positive Living is a magazine for all people living with HIV in Australia. Contributions are welcomed, but inclusion is subject to editorial discretion and is not automatic. The deadline is 21 days before publication date. Receipt of manuscripts, letters, photographs or other materials will be understood to be permission to publish, unless the contrary is clearly indicated. n Material in Positive Living does not necessarily reflect the opinion of NAPWHA except where specifically indicated. Any reference to any person, corporation or group should not be taken to imply anything about the actual conduct, health status or personality of that person, corporation or group. All material in Positive Living is copyright and may not be reproduced in any form without the prior permission of the publishers. n The content of Positive Living is not intended as a substitute for professional advice.
Budget to affect PLHIV
Handing over the reins Adrian Ogier started editing Positive Living in 2009. Twenty issues later and he’s handing over the reins.
said the measures were A $7 fee for patients to visit engineered to ensure Medicare’s their GP and increased colong-term sustainability and to payments for medicines listed on combat a shortfall in funding. the Pharmaceutical Benefits Critics of the changes — which Scheme are just some of the come into effect next year — said Budget policies that will impact they spelled the end of free people living with HIV. healthcare in Australia and would Under the changes, scripts will lead to a two-tiered increase by $5 up to health system. $42.70 for general Critics say the Meanwhile, patients; and by 80c changes to welfare for those with changes spell will see under-35s on concession cards – the end of free the Disability taking the cost to $6.90. Members of healthcare and Support Pension (DSP) have their the HIV sector would lead to a ability to work voiced concern over two-tiered reassessed by the changes, saying they would hit health system. governmentappointed doctors. patients with Such a move could chronic illnesses the see thousands of people on the hardest. There are also fears the DSP forced to take part in GP fee will deter people testing compulsory work programs — or for HIV. face penalties. Health Minister Peter Dutton
Positive Living is an exciting beast. It slinks up on you every three months and demands your attention. It requires a lot of feeding, many trainers, and a great deal of taming to pull it into line. Why the animal analogy? I’m not sure. Perhaps I’m feeling a little free and unfettered now that my wellloved baby is being cared for by another. And I know it’s in good hands. New editor Christopher Kelly comes with a wealth of journalistic experience and a passion for our community. Plus he has committed helpers. David ‘Steadfast’ Menadue, who never fails to come up with a compelling feature story. Neil ‘The Researcher’ McKellar-Stewart, whose attention to scientific detail is unparalleled. Stevie Bee with his inimitable design style and unerring patience in disputes over grammar and punctuation. Plus Daniel Brace, Jae Condon, Jane Costello, Vicky Fisher, James May, Alex Mindel, Louise Owen, Jo Watson, Peter Watts . . . all our contributors, fact-checkers and, of course, you, dear readers. Thank you. The ride has been glorious.
The barrier preventing doctors prescribing HIV treatment to people with CD4 counts above 500 has been removed. Now, anyone in Australia with HIV who has a Medicare card is able to receive subsidised treatment through the Pharmaceutical Benefits Scheme. Treatment can reduce the amount of inflammation that HIV causes inside the body. Early treatment may keep you healthy for longer and may even protect you from developing health problems later in life. Successful HIV treatment will also reduce the amount of HIV in your bloodstream to undetectable levels, meaning you are far less likely to pass on HIV to a sexual partner.
Melbourne joined a coalition of around 1,200 communities in 155 countries to mark the International AIDS Candlelight Memorial on 18 May.
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CONTRIBUTORS (FROM LEFT)
Alex Mindel plans ahead for AIDS 2014 l David Menadue gauges reaction to the PARTNER study l Christopher Kelly reports on the high cost of hep C drugs l Brent Beadle talks to Jo Watson l Dr Louise Owen gets to the bottom of a reader’s problem l Jules Clancy serves up hearty soups
COVER IMAGE: RAF, SET STYLING BY WEIHAN CHANG
The wait is over
PositiveLiving l 2 l WINTER 2014
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HIV rates fall in NSW
HIV rates have fallen in New South Wales. Figures released by NSW Health show a decrease in the number of new diagnoses of 13% in 2013 with 357 cases recorded, compared to 409 in 2012. However, due to rapid testing, experts warn of a probable rise in HIV diagnoses in the near future. Indeed, data shows that a pop-up testing centre at Sydney’s Mardi Gras this year found HIV in 2% of people — double the rate found in standard testing procedures.
Declaring an end to discrimination Ahead of July’s International AIDS Conference, organisers have released the Melbourne Declaration, which calls for the end of legal discrimination against people with HIV. International Chair of AIDS 2014, Professor Françoise Barré-Sinoussi, said such practices were violations of basic human rights. “Every individual has the same rights and dignity as everyone else as we are born equal and part of the human family,”
said Barré-Sinoussi. Responding to the Declaration, Living Positive Victoria called for the reform of state laws that criminalise the transmission of HIV (in Victoria there is a 25-year maximum sentence for intentional transmission). Individuals and organisations involved in the global response to HIV/AIDS are encouraged to visit aids2014.org, sign the declaration and share it with their networks.
Gene trial a success New quad on the block A once-daily, four-in-one, fixed dose combination pill was listed on the Pharmaceutical Benefits Scheme on 1 May. Stribild — also referred to as the ‘Quad’ pill — is the third single tablet regimen (STR) to become available to people living with HIV in Australia. Like the other two STRs, Atripla and Eviplera, Stribild is a highly effective antiretroviral (ARV) drug. STRs not only make it easier for PLHIV to remain drug adherent, they also reduce treatment costs. Stribild combines three active ARVs: a newly licensed integrase inhibitor, elvitegravir; and two reverse transcriptase inhibitors, tenofovir and emtricitabine. The fourth drug in this latest quad combination is a new 'booster' drug, cobicistat. Studies have found Stribild to be well tolerated with few liver effects. As with Eviplera, Stribild must be taken with food.
Scientists have successfully modified genes in the blood cells of HIV-positive people to help make them resistant to the virus. The radical therapy — never before tested on humans — raises hope that such an approach might one day free people living with HIV from their daily, lifelong drug regimen. The inspiration for the gene modification treatment came from the ‘Berlin patient’ who appears to be clear of the virus following stem-cell transplants in 2007/2008 from a donor with a natural immunity to HIV. Only 1% of the population is naturally resistant to HIV. These people lack the CCR5 protein that the virus latches on to in order to
the body’s natural immune cells. unlock blood cells and infect All of the participants in the them. Researchers have been study are now back on treatment. seeking to mimic the rare While only a mutation that makes some people “This is potentially a small-scale trial, HIV resistant by new therapy for HIV. Bruce Levine, who co-led the study at engineering a gene ‘Cure’ is a four-letter the University of in people’s blood word. We don’t like Pennsylvania, T-cells. Twelve people to use it, particularly described the early results as participated in the with HIV. We are encouraging: “This is American study, half of whom were taken looking at improving potentially a new therapy for HIV. off HIV treatment to the health and ‘Cure’ is a four-letter see if the cellular immune function of word. We don’t like engineering had any people with HIV.” to use it, particularly effect. Although the with HIV. We are virus returned in all looking at improving the health but one of them, the edited and immune function of people immune cells appeared to keep living with HIV.” the virus at bay — more so than
The provocative and pioneering work of Australian artist and AIDS activist David McDiarmid is currently being shown in a retrospective exhibition at the National Gallery of Victoria. Featuring more than 200 pieces, When This You See Remember Me reveals McDiarmid’s artistic and grassroots political response to the impact of HIV/AIDS during the 1980s and beyond. The exhibition coincides with the 20th International AIDS Conference in Melbourne in July (see page 5) and runs until 31 August. Entry is free. AT LEFT
Discard after use
© 1990 Reproduced with the permission of the David McDiarmid estate
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Condom use declines in Queensland For the first time in at least five years, the number of gay men in Queensland not using condoms outnumbers those who do. The 2013 Queensland Gay Periodic Survey — undertaken by the Kirby Institute with a sample
size of 1,103 gay men from Brisbane, Cairns, Rockhampton and the Gold Coast — indicates a 7.6% increase in the number of respondents reporting to sometimes not using condoms during casual sex. At the same time, the study found a 6.9% decrease in the number of gay men who always use condoms.
HIV raises risk of melanoma
People living with HIV have an increased risk of melanoma, regardless of antiretroviral treatment (ART). A team of Australian and UK researchers studied the association between HIV and melanoma before and after the arrival of ART. Compared to the general population, it was found PLHIV had a 26% increase of melanoma risk; for white-skinned people with HIV the risk increased to 50%. “Our findings show that the risk of melanoma in those with HIV remains elevated in the [ART] era,” said the study’s authors. The authors recommend fair-skinned PLHIV to be regularly screened for suspicious skin lesions and to avoid prolonged exposure to the sun.
Second baby HIV-free A second baby born with HIV has been brought into remission through early antiretroviral treatment (ART). After receiving a positive blood test for HIV, the baby girl from California was immediately administered high doses of AZT, 3TC and nevirapine. Now a year old, the child is apparently HIV-free. The case follows the discovery last year of an HIV-positive infant — dubbed the ‘Mississippi baby’ — who was also brought into remission following treatment upon birth (ART was stopped two years ago and the child remains virus-free). After the announcement of the California baby at an AIDS conference in March, paediatrics specialist Dr Deborah Persaud said: “This is a call to action for us to mobilise and to be able to learn from these cases.” Dr Persaud was keen to point out that, as the California baby
continues to receive ART, it is incorrect to call her ‘cured’. Rather, Persaud describes the baby as having “sero-reverted to HIV-negative” as no trace of the virus can be found in the baby’s blood or tissues. A clinical trial in which up to 60 HIV-infected babies will be put on drugs within 48 hours of birth is due to begin shortly. It will take several years, however, to determine whether that trial is successful. For now, the California baby offers more credible evidence that starting ART at birth seemingly kills HIV. Meanwhile, an HIV-positive adult female has also responded encouragingly to early treatment. Since the woman was put on ART, scientists can find no traces of the virus in her blood cells. “The data emerging on very early treatment — curing early infection — those are promising leads,” said Persaud.
Calls for DIY testing
AFAP Executive Director Chris Murphy at the birth home in Karwere
Aussie charity saves babies Babies in a rural village in Zimbabwe are being born HIV-free thanks to Prevention of Mother-to-Child Transmission (PMTCT) medication being administered at a birth home built by Australian charity AFAP. According to the World Health Organisation, more than 20% of pregnant women aged 15-49 in Zimbabwe test HIV positive during antenatal screening. To protect the unborn baby from infection, antiretroviral treatment (ART) is given to the mother during pregnancy and childbirth.
New protein in coral inhibits HIV A new class of protein found in coral off Australia’s northern coast is capable of inhibiting the transfer of HIV into the body’s T-cells. In a chance discovery, a In the last of a series of features explaining the different classes of HIV treatments available, Jae Condon looks at protease inhibitors.
coral phylum called cnidaria has been found to block HIV at concentrations of a billionth of a gram, making it potentially ideal for use in microbicide gels or
sexual lubricants. Senior investigator at the US National Cancer Institute's Centre for Cancer Research, Barry O’Keefe, described the find as
The protease inhibitor TREATMENTS UPDATE
Once HIV DNA enters the nucleus of the CD4 cell (integration), the CD4 cell becomes a sort of HIV factory that produces building blocks for new HIV. The next steps of HIV replication are transcription, translation and assembly.
WITH JAE CONDON
Transcription From HIV DNA two strands of RNA are built and transported out of the nucleus of the CD4 cell into the main body of the CD4 cell. Translation One strand is copied into new parts of HIV including protease, reverse transcriptase, integrase as well as structural proteins. The other strand becomes the genetic material for new HIV.
thrilling. “The fact that this protein appears to block HIV infection — and to do it in a completely new way — makes this truly exciting,” he said.
An HIV cell
Assembly Strands of RNA and viral enzymes gather at the edge of
the CD4 cell. These components need to be separated and cleaved into the correct sizes and lengths
PositiveLiving l 4 l WINTER 2014
to be able to produce new HIV. An enzyme called protease splits these long strands into viral proteins. This stage of the HIV life cycle can be blocked with protease inhibitors. Protease inhibitors prevent viral replication by selectively binding to viral protease which normally cuts long chains of HIV proteins into smaller individual proteins. When HIV protease does not work properly, new HIV cannot be made. The introduction of protease inhibitors in Australia in 1996 — often referred to as the ‘protease moment’ — gave positive people the first truly effective treatment combinations that could fully
Following a change in UK law allowing people to test themselves at home for HIV, calls have been made in Australia to follow Britain’s lead. It is hoped the DIY hometesting kits will help lower the number of undiagnosed HIVpositive people and so reduce the risk of transmission. (There are thought to be around 25,000 people in the UK unaware of their HIV status; in Australia, it is estimated that up to 7,000 people are undiagnosed.) The DIY kits — that work by analysing saliva samples taken with a swab — also offer people reluctant to go to a clinic to be tested an alternative option. Although HIV testing kits are available online, these can be unreliable and give false results. Meanwhile, a report by the Kirby Institute reveals one-third of gay men aged 18-24 have never tested for HIV. The report recommends making HIV testing more accessible. suppress HIV to undetectable levels. This gave many HIVpositive people great hope of living longer, preserving immune function and avoiding AIDSrelated symptoms. As with many early HIV treatments, some of the first protease inhibitors caused serious side effects. Thankfully, these days, many newer and more sophisticated protease inhibitors are available and remain a popular choice for people living with HIV. Boosting Because they are administered in low doses, most protease inhibitors require boosting with a small dose of another drug that uses the same pathway in the liver for metabolism. These boosting agents can also potentiate other medications so it is important that your doctor knows of other treatments, supplements and recreational drugs you may be taking.
Conference a go-go Only a few weeks to go before Australia plays host to the International AIDS Conference. AIDS 2014 will take place from 20-25 July at the Melbourne Convention and Exhibition Centre and will bring together more than 14,000 delegates from countries around the world. The conference will be held on the traditional land of the Wurundjeri people of the Kulin Nation. AIDS 2014 provides the opportunity for delegates to engage with leaders in the HIV sector; access new science; take part in policy debates; be exposed to new ideas; build networks; develop collaborations across different sectors; and increase Australia’s engagement at a regional level. President of the International AIDS Society and International Chair of AIDS 2014, Professor Françoise Barré-Sinoussi, said: “We are looking forward to outstanding science and vigorous debate on all aspects of the HIV response in July in Melbourne. Innovative science, strong leadership and community engagement will all contribute to accelerating advances in the fields of HIV prevention, care, implementation and cure.” WHAT TO LOOK OUT FOR The Global Village is open to the general public and admission is free. Conference delegates and non-delegates alike can enjoy this diverse and vibrant space where communities from around the world can meet, share ideas and learn from one another. Not only will the Global Village facilitate community dialogue, it will also play host to workshops, performances, educational sessions, film screenings, and art
exhibitions. Networking Zones are a crucial component of the Global Village program. They will allow groups focused on specific populations from different parts of the world to meet and engage with delegates and the wider public. While you’re in the Global Village look out for Central and Vital over 30 years, NAPWHA’s curated exhibition featuring memorabilia and artefacts that define three decades of HIV in Australia. The exhibition will cover art, politics and community action. Exhibits include the Sydney Star Observer’s first HIV-related news article published in 1981; archived images of early treatment activism; a DVD capturing the oral history of HIV in Australia — and much more. DAILY PLENARY SESSIONS Plenary speakers and topics are listed on the AIDS 2014 website (aids2014.org). The program features an amazing range of speakers from around the world. For the first time ever, all daily plenary sessions will have a person living with HIV either chairing the session or appearing on the panel. The visibility of PLHIV will act as a reminder that an effective response to the HIV epidemic worldwide can only be achieved with the inclusion of positive people. Each day of the conference will follow a particular theme:
Death of Kings is a moving, lively and honest display of how a community came together to face tragedy with hope, grace, courage and flair. It will run from the 15-19 July at Howler, 7-11 Dawson Street, Brunswick.
ART BY PHILLIP McGRATH
With the 20th International AIDS Conference a month away, Alex Mindel provides a round-up of what’s what, where and when.
n Monday 21 July Where are we now? n Tuesday 22 July What’s holding us back and how do we move faster? n Wednesday 23 July No one left behind n Thursday 24 July Stepping up the pace: making the long term short term n Friday 25 July Where are we headed?
Added to this, there will be an AIDS 2014 Daily Bulletin. THE POSITIVE LOUNGE The Positive Lounge will offer facilities and services specifically with PLHIV in mind. It promises to be a place of respite, support
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and networking. Open daily, the Positive Lounge is a fantastic, chillaxed space to recharge your batteries before resuming conference activities. AFFILIATED INDEPENDENT EVENTS These satellite events are independently organised and supplement the AIDS 2014 program. They will take place in or around Melbourne, but outside of the conference venue itself and outside the official conference program. For example, NAPWHA will host The Death of Kings, a cabaretstyle performance that relives the Sydney gay scene in the 1980s during the early years of HIV. The
AUSTRALIAN CULTURAL PROGRAM The Australian Cultural Program includes a multi-sectoral range of more than 80 events across Melbourne and Australia. It includes all activities related to AIDS 2014 which are not occurring within the conference program and are not an affiliated independent event. The program includes performances, forums, and debates, art exhibitions, sporting events, community activities — such as a candlelight vigil — and LGBTIQ history tours. The AIDS 2014 General Information Guide contains useful and practical information about the conference and is now available for download from the website. This comprehensive document gives you an overview of the conference and provides all kinds of information a conference delegate needs. Finally, there are many ways in which you can keep up-to-date in the lead-up to the conference. An app has been developed, and information about conference events will be loaded on the Welcome to Melbourne tab on the AIDS 2014 website. This app will be an essential support tool for your AIDS 2014 experience. An in-depth webinar — Navigating the Conference — featuring roadmaps, session times, a full list of facilities, and conference survival tips will also be active from 10 July on the AIDS 2014 website. Oh, and don’t forget to sign up for the NAPWHA AIDS 2014 newsletter: ow.ly/xBbYx. See you there! n Alex Mindel is NAPWHA’s Communications and Membership Services Officer.
IMAGES: EXPOSITION BY RAF, SET STYLING BY WEIHAN CHANG
Risky business? For some, the PARTNER study has blurred the lines between safe and unsafe sex but, as David Menadue reports, don’t throw away the condoms just yet. Almost zero risk of HIV transmission between poz-neg couples — that’s the initial finding from the European-based PARTNER study. There are crucial caveats, however: the positive partner must be on antiretroviral therapy (ART) and record an undetectable
viral load. Still, the results from the two-year study are welcome news for couples in a serodiscordant relationship. Almost 40% of the 1,110 couples who took part in the PARTNER study were gay. In order to qualify, couples had to be engaging in unprotected sex; the HIV-negative partner could not be on post-exposure or pre-
exposure prophylaxis; the positive partner must be on ART, and have a viral load less than 200 copies per ml. As a consequence, 343 couples were excluded from the analysis for not meeting the requirements. The 767 couples remaining reported 44,000 instances of condom-less sex, without a single seroconversion. (While there was HIV transmission recorded in the
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cohort, DNA testing suggested some negative partners had sex outside of the relationship — presumably with someone unaware of their true HIV status, or who didn’t have an undetectable viral load.) So — providing the positive partner is on ART and undetectable — can serodiscordant couples give condoms the flick? PARTNER
principal investigator Professor Jens Lundgren said, while the results are promising, a transmission rate of 1% a year for couples engaging in unprotected anal sex could not be ruled out; where the negative partner reported receptive anal sex with ejaculation, the transmission risk rose to 4%. When asked how safe these odds might be, Professor Lundgren replied: “It’s up to people
to decide what is safe in life.” However, serodiscordant couples have been cautioned to wait for further research results as the risks of transmission for partners who continue to have condom-less sex is likely to increase over time. There is a possibility, for instance, that an HIV-positive person’s viral load may fluctuate — particularly if they are not in the habit of taking their treatment on a regular basis. Resistance to HIV medications can certainly develop in this scenario and people can be unaware that they are no longer undetectable, and, therefore, potentially infectious. As you would expect, the study’s findings have provoked much discussion in the HIV community. Positive Living asked a range of people for their views on what the early results from PARTNER might mean. THE EPIDEMIOLOGIST Professor Andrew Grulich is an epidemiologist from the Kirby Institute in Sydney and chief investigator for an Australian study looking at transmission rates, called Opposites Attract. Grulich thinks the PARTNER results are encouraging news but said people should be cautious about making definitive conclusions about the study’s findings, particularly when it comes to gay men and anal sex. “It is early days yet, and the PARTNER study has two more years to go. It is going to be important to see if there are any HIV transmissions in four years when they are due to make their final report.” Grulich would also like to see a bigger sample size for the Australian research. Opposites Attract currently has 120 Australian serodiscordant gay male couples enrolled in the study. “We are hopeful we can increase this to around 200 couples with recruitment from Brazil and Thailand,” he said. “We hope other Australian couples will still join too. If [Opposites Attract] can add further to the PARTNER study’s research sample of gay men, we should be able to make a stronger statement in a few years time.” THE HEALTH PROMOTION MANAGER Colin Batrouney, Manager of Health Promotion at the Victorian AIDS Council/Gay Men’s Health Centre, thinks the study is a very important finding. “Of course for a big reduction in
HIV transmissions to happen in the community, individuals will need to know they are HIV positive, so there would have to be an increase in numbers testing for HIV. If testing positive, they would need to make a decision to go on treatment, which we know many are not prepared to do unless there is a really compelling clinical reason to do so,” said Batrouney. “I see another obstacle as well for some people. People will have to have a frank discussion with their sex partners about the relative safety of having unprotected sex, and for disclosure of an undetectable viral load to happen upfront.” LEADER OF AN HIV-POSITIVE ORGANISATION Brent Allan, Executive Officer at Living Positive Victoria, said, if the PARTNER results stand up, disclosing your HIV status may become easier. “Disclosure is such a vexed issue for many positive people because they fear rejection and potential legal implications if they don’t,” he said. “This study could change the perceptions of positive people in the community as being someone to be avoided as a sex partner to someone who is active in ensuring they are lowering their transmission risk to others. In other words, they are ‘healthy and responsible sexual partners’. But education of the broader community will need to happen for this to occur.”
THE SEXUAL HEALTH DOCTOR Other interesting data observed in the PARTNER study was that, even though 16% of the gay male cohort experienced a sexually transmissible infection (STI), this did not lead to an HIV infection for the negative partner. This counters evidence that having an STI increases a person’s vulnerability to HIV transmisisons. The investigators warned though that it is premature to be certain about these findings and that more research is needed. Even so, “This is very encouraging news,” said Dr Louise Owen, Director of Statewide Sexual Health Services in Tasmania. “But I would advise caution in relying on these findings about STIs just yet. It is still early days for us to be sure there is no relationship between STIs and HIV transmission in the setting of undetectable viral load, and people with HIV need to keep up their regular STI testing practices, regardless,” she said. “My concern is for the sexual health of my HIV-positive patients. I don’t think it is good for their personal health to get an STI. For example, syphilis can progress to neurosyphilis in an HIV-positive person much quicker than for an HIV-negative person. And as we now know, hepatitis C can be sexually transmitted; the health consequences of contracting that can be significant for people living with HIV.”
THE HIV-POSITIVE BLOGGER Journalist and blogger Gus Cairns recently wrote in The Huffington Post that the biggest message to take from the PARTNER study is that gay HIV-positive men need to get on treatment and get their viral loads down to undetectable. “It confirms that we gay men have to change our ideas about infectiousness and HIV radically if we are to stand a chance of reducing HIV infection in our community.” Addressing HIV-negative gay men, and using UK statistics, Cairns said: “Of [the] HIVpositive people you may be dating, two-thirds will know they’re positive, but won’t be infectious. But of the infectious ones, twothirds will think they’re negative.” (Australian figures echo those of the UK.) Cairns added: “If you’re an HIV-negative guy and you don’t use condoms every time with a new date, then just date HIVpositive guys on treatment.”
THE POZ-NEG COUPLE Steve and Dan have been in a relationship for five years. “I knew Dan was positive when we met and of course we used condoms pretty much 100% of the time at first,” said Steve. “After a while,” added Dan, “we asked for advice from our local HIV-positive group. They said they couldn’t say anything definite but [unprotected sex] was certainly not as risky if I had an undetectable viral load. I did have, so that got us wondering. “We also asked other people in poz-neg relationships, including some positive women we knew. They said they hadn’t been using condoms with their negative partners for over a year and no one had seroconverted.” “The interesting thing they told us was it was safer to do this when the HIV-positive partner was not the male,” said Steve. “In gay male terms that meant that research showed it was safer to be a bottom if you were the HIV-
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positive partner. Sometimes now we don’t use condoms, but it’s only when I am the top.” “I prefer being the bottom anyway,” said Dan. “But we might re-evaluate things once we know more about studies such as PARTNER.” FURTHER IMPLICATIONS There could be further implications from PARTNER for HIV-positive people. “There can be no reasonable legal action you can take against people not using condoms,” said Professor Lundgren, “assuming people had maintained their undetectable viral load.” Could it be possible, therefore, for an HIVpositive person to argue before a court in NSW, for instance, that by taking treatments they have “taken reasonable efforts to avoid the transmission of HIV”? (The term “reasonable efforts” currently only refers to the use of condoms.) Will prosecutors be less inclined to start legal proceedings against a poz person under HIV exposure or reckless endangerment laws if it can be proven that the positive person is extremely unlikely to transmit the virus during unprotected sex? Legally, these are questions of fact that would need to be tested before a jury. In the past, Australian courts have been reluctant to consider undetectable viral load to be an adequate safeguard in endangerment cases. But courts are guided by expert evidence in these matters and, as the scientific consensus shifts, the courts should — eventually — follow. At the very least, such evidence provides more strength to the case for HIV advocates to push further for the decriminalisation of HIV. Professor Lundgren also believes PARTNER shows that, if a person has had unprotected sex with an HIV-positive person who is virally suppressed, there would be no need for post-exposure prophylaxis. “The odds of transmission in one sexual act would be deemed to be so low that taking a month’s prescription of antiretrovirals to
prevent infection might not be justified,” said Lundgren. TAKE-HOME MESSAGE From my point of view, the PARTNER study gives greater assurance to serodiscordant couples who are regularly weighing up the risks of transmission with any unprotected sex they have. For positive people with an undetectable viral load who have a lot of casual sex, I think it
should give people more confidence to disclose their status before sex — and to use the opportunity to get their partners up to speed with the latest thinking in the science on HIV transmission. Regardless of whether you think you are uninfectious though, you owe an HIV-negative person the right to decide not to have sex with you if they are worried about infection. Failing that, you can always revert to the old tried and tested method . . . and put on a condom.
The co t of living Big Pharma is being urged to lower the price of new life-saving hep C drugs, says Christopher Kelly.
There are calls worldwide for effective new hepatitis C drugs to be made more widely affordable. In the US, one such drug — sofosbuvir — developed by Gilead Sciences costs US$84,000 for a 12-week course of treatment (that’s US$1,000 a pill). With sales of more than US$2.3bn so far, sofosbuvir has already sold more than any other drug in its first quarter on the market; analysts predict that figure could reach US$10bn by the end of the year. Other companies, including Bristol-Meyers Squibb and AbbieVie, are developing similar drugs with similar profit expectations. Until recently, drugs to treat
the hepatitis C virus (HCV) had a dismal record of success. They also came accompanied with such brutal side effects that doctors advised patients not to take up treatment until absolutely necessary. In stark contrast, the new generation of HCV drugs — known as direct-acting antivirals (DAAs) — have been found to have up to 95% cure rates, with little-to-no side effects. The development of DAAs coincides with a dramatic rise in terminal liver disease. “Liver cancer associated with hepatitis C is the most rapidly growing cancer in the Western world,” Professor Geoff McCaughan, one of Australia’s leading hepatologists, told the ABC. Hepatitis C is a common coinfection among people living with HIV. Worldwide, up to five million PLHIV also have HCV.
This co-infection causes rapid progression of liver disease and mortality. Professor McCaughan is lobbying hard for the new class of HCV drugs to be subsidised, especially for the most vulnerable. He is not alone. In February, activists from 22 countries convened in Bangkok to demand equitable access to the new drugs. Doctors without Borders is also lobbying for affordable access. Meanwhile, US lawmakers have called on Gilead to justify the price of sofosbuvir. In an open letter to the company, a group of Democrat Congressmembers wrote: “Our concern is that a treatment will not cure patients if they cannot afford it.” In response, Gilead says, considering the drug’s effectiveness, the price is more than reasonable. The company argues that, in the long run,
sofosbuvir provides value for money as it’s a one-off cost offering a lifetime cure. Gilead also points to the fact that sofosbuvir is available at a reduced price of around $900 per course in a number of lowincome countries such as India, Kenya and Mozambique. But according to Andrew Hill of the Department of Pharmacology and Therapeutics at the University of Liverpool, sofosbuvir costs per treatment as little as $150 to produce. While the drug may be available to lowincome countries at 1.1% of the standard price, the reduced cost is still an impressive mark-up. “If the current high prices continue, it is likely that very few people will be treated and the overall epidemic of hepatitis C will continue,” said Hill. The controversy surrounding
the pricing of the new HCV drugs echoes the fight a decade ago for HIV drugs to be made more widely affordable. Back then, the cost of antiretrovirals meant people living in developing countries were often denied treatment. Today, because of competition from generic drug companies, HIV-positive people in low- and middle-income countries are able to afford lifesaving treatment. More than 350,000 people are estimated to die from hepatitis Crelated liver diseases each year. Dr Stefan Wiktor, head of the global hepatitis program at the World Health Organisation, believes that without affordable HCV drugs people will die unnecessarily. “People are dying from liver cancer, from cirrhosis,” he said, “and these deaths can be prevented.”
Australia on immigration discrimination list BY STEPHEN WATKINS
Australia sits alongside China, Russia, Iraq and North Korea on a UNAIDS list of 59 countries that enforce HIV-specific restrictions on immigration. In the lead-up to AIDS 2014 in Melbourne in July, representatives from UNAIDS requested several communitybased HIV advocacy organisations to evaluate the
current immigration system, and to suggest possible changes that would allow Australia to be removed from that list. In response to the request, NAPWHA, AFAO, ASHM and HALC have produced a joint Australian Community Organisation Briefing Paper on HIV and Immigration Policy. The briefing paper recommends an end to mandatory testing for HIV and suggests that testing
should be offered as part of a settlement process that includes pre-test discussion and post-test counselling, in accordance with the National HIV Testing Policy. The report also suggests that a ‘health waiver’ should be available for all permanent visa classes. This health waiver should be granted automatically where there are humanitarian concerns and, where there are not, applicants should have the
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opportunity to demonstrate other compassionate or compelling reasons why they should be able to stay. The paper also calls for the removal of the proviso that requires nonmigrating dependants of the applicant to also undergo an HIV test. Aaron Cogle, Deputy Director of NAPWHA, said: “The current process is discriminatory, stressful, and
unnecessarily expensive both for the government and the applicant. This briefing paper outlines some changes we think are achievable and that would make a significant difference to PLHIV migrating to Australia.” The report has been submitted to UNAIDS and it is hoped that beneficial changes for PLHIV immigrating permanently to Australia will be made ahead of AIDS 2014.
After 16 years at the helm of NAPWHA, Executive Director Jo Watson bids farewell. Brent Beadle sat down with Jo for a one-on-one Q&A. Brent Beadle (BB): How has the response to HIV changed since you joined the sector? Jo Watson (JW): One of the most obvious changes over the years is the response turnaround due to the success of HIV treatments. Over recent years, we’ve seen lives sustained and people living so much better than in the early days. This change has occurred, yes, because of scientific breakthroughs, but also because of an incredibly focused leadership. Australia’s HIV response is a model for health sectors and community development around the world. And the HIV story isn’t over yet — it will continue to show us amazing things into the future. BB: What kept you in the sector so long? JW: One of the reasons why a lot of people stay working and contributing and volunteering in this space is because there’s always something to do. If you are, for whatever reason, personally involved and wanting to make a contribution, this is a space like no other. It’s got passion, it’s got emotion, and it’s got cutting-edge science. The sector contains a very diverse community that’s rich with a lot of people’s history and a lot of people’s different motivations. I think that makes it a really interesting area, and it also makes it a really stimulating area — professionally and personally. We’ve seen huge advances and huge achievements. BB: Is there a specific achievement you’re particularly proud of? JW: The greatest achievement is that NAPWHA is recognised as an organisation of critical importance to the national — and international — HIV response. NAPWHA is an organisation that is respected and valued by others; it’s an organisation that the membership can quite rightly be
End of an era I WALK AWAY KNOWING PEOPLE RECOGNISE THAT NAPWHA MAKES POSITIVE LIVES COUNT. I’VE WANTED MEMBERS AND REPRESENTATIVES TO FEEL THAT THEY COULD WALK INTO A ROOM AND BE VERY PROUD OF THE FACT THAT THEY REPRESENT THE NATIONAL ASSOCIATION OF PEOPLE WITH HIV AUSTRALIA — AND WHAT ALL OF THAT STANDS FOR. I THINK PEOPLE DO HAVE THAT PRIDE AND THAT MAKES ME PROUD, TOO.
proud of. And I’m very proud of the fact that I’ve been part of the story of how that has happened. BB: You’re leaving at a time of uncertainty for the sector — organisations such as NAPWHA are experiencing job losses and other cost-cutting measures — how does that make you feel? JW: Two things I want to be very clear about: I decided not to continue with NAPWHA because my contract was coming up for renewal and I felt it was probably time to call it a day rather than
negotiate the next term. I think that should be understood as a very personal decision — it’s got nothing to do with the current environment or the funding pressures. The second point is no-one expected that at this point in time [the first week in June] all the national peak organisations in the blood-borne virus sector would still be without any advice as to funding beyond the 30th of June. It’s unprecedented. It’s incredibly distracting, and it’s incredibly unsettling — especially in a year when Australia hosts the
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tried to be a glass half full sort of person and I believe NAPWHA will prevail. Regardless of which government is in power, NAPWHA has always been a critical ally in the response to HIV. I’m absolutely certain that we will find a way to continue through until such a time we can get firmer funding arrangements resolved and put in place. BB: What do you think will be the major challenges facing the sector in the future? JW: HIV has been repositioned in the eyes of funders and government. HIV is no longer seen as a unique health threat. The recent Budget has shown us that the sector is incredibly vulnerable at the moment in terms of a whole range of changes and cuts. There exists immense uncertainty in terms of how this current government intends to reshape the health system. All of this coincides with an ageing population increasingly burdened with chronic illness. It’s a perfect storm. We’re going to be looking at some very hard times for people in terms of health outcomes and also in terms of whether or not we can continue to maintain what have been some pretty amazing success stories. And I think the HIV story is a success story. BB: How would you like to view your legacy?
International AIDS Conference. This is the year when the spotlight will be on Australia and the Australian response to HIV. We are meant to be finalising the new National HIV Strategy — a document mapping the way we respond to HIV in Australia for the next four years, and which identifies NAPWHA as a critical partner to that national response. The fact that could be launched when we have had to make cuts and introduce very significant program interruptions is just extraordinary. Having said that, I have always
JW: NAPWHA has always put an emphasis on maintaining relationships with depth and meaning. Whether across industry, across government, other NGOs, community-based partners, or clinical communities, NAPWHA has shown the value of partnership. Through partnership, NAPWHA has helped the community to mobilise itself and take responsibility for achieving its own outcomes. I am incredibly honoured that PLHIV have entrusted me to help lead this extraordinary organisation. I walk away knowing people recognise that NAPWHA makes positive lives count. I’ve wanted members and representatives to feel that they could walk into a room and be very proud of the fact that they represent the National Association of People with HIV Australia — and what all of that stands for. I think people do have that pride and that makes me proud, too.
DOCTOR LOUISE ANSWERS YOUR QUESTIONS
A pain in the butt Jason from the Sunshine Coast, Queensland writes: I always seem to have an itchy bum. I’ve been screened for STIs and had a colonoscopy and all is fine — so what could it be and what should I do? Dr Louise replies: Hi Jason, this is a common complaint and can be quite annoying, especially if the urge to itch happens in public! Usually the itch is because of irritation around the anus and surrounding skin. There are a number of things that may aggravate it. Certainly in hot weather, or when you have been exercising and sweating more, it may be worse and then actually scratching the skin can cause damage to the area and make things worse still. If you are prone to skin conditions such as eczema or psoriasis then this may be causing the itch. It is usually best to tell your doctor about your symptoms
and have an examination to check for skin conditions, ulcerations or evidence of infection. Some general tips that might help include: try to stop scratching! Sounds difficult, but cut finger nails short and resist the urge to scratch. Avoid soaps, powder and perfumed toilet tissue. Sometimes there can be a contact dermatitis due to the additives or dyes in the toilet paper that can cause further irritation. Excessive showering and washing of the genital area can reduce the natural oils from this area and make the skin more prone to inflammation and infection. Aqueous creams can be used in moderation as an alternative to soap. After washing, avoid vigorous drying: gently pat the area dry or use a hairdryer to dry the area. A healthy diet will assist with regular bowel movements; clean gently after bowel movements,
using cotton wool rather than toilet paper. Before using any topical creams, seek medical advice and always think about having a regular test for sexuallytransmissible infections as many STIs may not have any discernible symptoms.
Keep your questions under 100 words and email them to firstname.lastname@example.org. n Dr Louise Owen has been working as a Sexual Health Physician in the HIV sector since 1993. Previously a Director of
VAC’s Centre Clinic in Melbourne, she is currently the Director of the Statewide Sexual Health Services in Tasmania. Her advice is not meant to replace or refute that given by your own health practitioner, who is best placed to deal with your individual medical circumstances.
SUPERfoods Hearty soups When it comes to preparing meals, Australian food blogger Jules Clancy believes in keeping things simple. Pure and simple. Using real whole foods. Most of the recipes on Jules’ blog — thestonesoup.com — contain only five ingredients and are designed to be made in minutes. “The thing is,” says Jules, “you can make healthy, delicious meals without spending hours in the kitchen.” Jules, who has a degree in food science and lives in the Snowy Mountains, believes in stripping food back to its essentials: “When you let the ingredients speak for themselves, it can only mean good things from a flavour perspective.” With winter upon us, here are a couple of Jules’ recipes for simple but hearty soups.
Chunky zucchini and pesto soup
Broccoli and parmesan soup
This is great as an immunity booster, full of fibre and lots of vitamin C. SERVES 1
l 1 onion, chopped l 1½ cups vegetable or
chicken stock or water l 200g zucchini l 2 garlic cloves, peeled
2 l 2 heads broccoli, chopped
l 1½ cups fresh basil leaves l ¼ cup pine nuts l ¾ cup grated parmesan
including tender stalks l 1 small piece of parmesan rind
(optional), plus shaved parmesan to serve l 1 tblsp soy sauce l 1 tblsp lemon juice
cheese l 6 tblsp extra virgin oil
To make the pesto: Place the garlic, basil leaves, pine nuts, parmesan cheese and olive oil into a blender, and on a low speed blend intermittently until sauce is creamy To make the soup: Heat a little oil in a medium saucepan. Add the onion and cook, covered for 5-10 minutes until soft and golden. Add the stock or water and zucchini. Simmer for 15-20 minutes or until the zucchini are cooked. Taste. Season and serve with a dollop of pesto on top.
PositiveLiving l 10 l WINTER 2014
n For more simple, healthy recipe ideas visit thestonesoup.com
To make the soup: Bring 2 cups of water to boil in a medium saucepan. Add broccoli, parmesan rind (if using) and soy sauce. Cover and simmer rapidly for about 8 mins or until broccoli is tender. Puree in the saucepan with a stick blender until smoothish. Taste and season with salt, pepper and lemon juice. Serve with extra parmesan sprinkled on the top.
D-Day Positive people share their diagnosis stories
PAUL’S STORY I was 29 years old, it was the late 1980s and I was living on the fringe of Sydney with my partner of eight years. We decided on a three-month separation and he moved interstate. After three months he returned and we were both keen to resume our relationship. Having both had sex with other people during that time we knew it was important to be tested for HIV and visited the GP we shared. Bloods were taken, and we awaited the date for our results. I remember vividly that day. Sitting in the waiting room I watched the doctor’s door open. I can still see the look on his face; his eyes as they met mine. It was a look of shock, and my heart jumped a beat as I made my way into his room. “Paul, I am very sorry to have to tell you that your test has shown a positive response to HIV antibodies. This means you have the Human Immunodeficiency Virus. I am referring you to a clinic at Parramatta Hospital, where they will test you again to confirm your results.” I drove home, walked inside, fell into my favourite lounge chair and began to cry. Over the next three hours my mind raced through myriad thoughts. Tears continued to flow, my body at times heaving. I recall reaching a point where I said to myself: “This isn’t a bad dream I will wake up from.” When my partner arrived home from work, I learnt his test was negative. There were more tears as we talked late into the night. My positive diagnosis was
later confirmed at Parramatta, and the next stage of my journey with HIV commenced.
DIANNE’S STORY I found myself in the emergency department being cared for by soft-spoken nurses. I had no memory of getting there and realised I did not know who I was; only that I was safe. The nurses explained I had suffered a seizure and I was taken for a CAT scan. Not long after, a doctor arrived with a clipboard and a serious look on his face. He proceeded to tell me that the CAT scan revealed five tumours on my brain. “I'm very sorry,” he said, “but you have secondary brain cancer." I was almost at peace with the
idea that I would be leaving the world soon. You see, I had been sick for months and was so tired; exhausted from fighting fevers, fatigue, and debilitating coughs that left me struggling to breathe. A few days later, I was having brain surgery. After surgery, a team of doctors started asking questions about my recent health. Given my past months of sickness, they suggested there might be another reason for my ill-health other than brain cancer. They told me I had toxoplasmosis. Toxoplasmosis, they explained, is one of the opportunistic infections that comes from HIV. They then asked my permission to conduct an HIV blood test. A couple of days later, the doctors came back with my results: I was HIV positive. I took a deep breath and sighed with relief. “Thank God!” I exclaimed.
PositiveLiving l 11 l WINTER 2014
Seeing the doctors’ bewilderment at my response, I explained that I was relieved that it wasn’t brain cancer after all; I knew HIV medication was saving people and that I would not die. It was only then that I learnt I was in the late stages of HIV. Due to the numerous opportunistic infections I had presented with, I was told I may have had the virus for up to a decade. The news immediately made my heart stop. You see, I had an eight-year-old son. The idea I may have infected him was more than I could bear. In the event I had not.
JEFF’S STORY I came to Australia in November 2011 from South Carolina in the USA. I was
approaching my 30th birthday and was drawn to Sydney because of its large gay community, and had been told Mardi Gras was worth experiencing at least once in my life. Months after arriving, I came down with the flu. I had a fever that wouldn’t quit, chills, and a wicked cough. I was long overdue my annual HIV and STI test so I booked into the Sydney Sexual Health Centre. While my blood was being drawn, I asked if rapid testing was available in Australia. The answer was no, but they had a few tests left over from a recent study. I hate waiting, so I agreed to sign the study paperwork and have a rapid test. As I sat waiting for the result, I thought through my recent sexual behaviour — a positive result was entirely possible. Thirty minutes elapsed, and I was taken into a room and told I had tested positive for HIV. There was, however, a one-in200 chance that the result was a false positive, so I had to wait for the results of the blood test. I was confused, overwhelmed and scared. A week later, the results were in: I was, in fact, HIV positive. The psychologist asked, “How are you doing?” My response was simply, “How do I meet other recently diagnosed gay men in Sydney?” Has HIV changed my life? Absolutely. But I feel it’s only for the better. It’s gotten me active in a community that I had previously ignored. I’ve chosen to take a negative situation and use it as an opportunity to participate in the community and play my role in fighting stigma and educating others about HIV. I disclose at any opportunity and live openly as an HIV-positive gay man. And I feel I’m better for it.
PLHIV centre-stage in national HIV strategy Living Positive Victoria has delivered a public response to the draft National HIV Strategy 2014-2017, highlighting the vital role PLHIV play in a re-energised national response to HIV. The HIV Strategy is one of five draft strategies — addressing HIV, hepatitis B, hepatitis C, STI, and BBV and STI in the Aboriginal and Torres Strait Islander population. National overarching public health strategies such as the National BBV and STI Strategies are essential to inform an articulated and organised response. These strategies inform the work of national and state agencies to better prioritise resources and services for individual and public benefit. "We encourage the Australian government to demonstrate decisive leadership and political commitment, and support the community vision of the virtual elimination of HIV transmissions. The best care, support and treatment for people living with HIV will also be essential, and addressing HIV stigma issues underpins these," said Ian Muchamore, President of Living Positive Victoria. The response provided to the federal government highlights some key areas of improvement to the draft National HIV Strategy, including: support for bold and SMART (Specific Measurable Achievable Relevant Timebound) targets and a political commitment to a vision of eliminating HIV transmission by 2020; better integration across the national approach in addressing HIV-related stigma, discrimination, legal and human rights issues; faster roll-out encouraged of new innovations in treatment and prevention; and a combination prevention approach which has strong leadership and community involvement. These national strategies promote partnerships between community, clinicians, researchers and governments. They are vital to tackling the priority areas of prevention, care, support and treatment. Living Positive Victoria takes an active role in each of these priority areas in delivering services and providing support to all people living with HIV. ¢ You can read the full Strategy response at: livingpositive victoria.org.au
news LIVING POSITIVE VICTORIA livingpositivevictoria.org.au
Melbourne embraces AIDS2014 Here at Living Positive Victoria, the excitement is starting to build in earnest as AIDS 2014 gets nearer each day. Since the announcement was made that Melbourne would be the host city, the team at Living Positive Victoria has been busy reaching out to the international and local community to make sure that people living with HIV feel welcomed, represented and included in every element of the activities in and around the conference. And the Victorian community has responded by opening their arms, hearts and minds. There is a terrific energy about the city as we already see an increased awareness of the lived experience of HIV, its challenges and triumphs, and the need for re-energised commitment to the global fight against AIDS. Some of the flowers of collaboration between Living Positive Victoria and the community have already bloomed. One such project is James Welsby's new contemporary dance work, HEX – which featured in the
Next Wave Festival in May. Hex asks how the generation born during the HIV/AIDS crisis can comprehend the epidemic’s impact on queer identity. One positive person wrote in response to seeing the dance work: “Last night's performance has ignited something within that makes me want to ACT UP and fight AIDS all over again!” Meanwhile, Living Positive Victoria's Positive Speakers’ Bureau has been working with students from the Victorian College of the Arts to produce two full theatre works as the students are exposed to both the scientific and societal elements of HIV, and the real experience and resilience of the people who live it. All of this activity is helping to build community awareness in preparation for AIDS 2014. During July, Living Positive Victoria will take an active role in welcoming positive people to Melbourne and in linking these international visitors with our own resilient community of PLHIV. There are too many AIDS 2014 events
and activities to be listed here, so we're encouraging people to connect with us at facebook.com/LivingPositiveVictoria; Twitter @livingposvic; or at living positivevictoria.org.au/aids2014. You can also subscribe to Poslink Express by emailing email@example.com. In addition to all the events and activities, Living Positive Victoria will be championing the role and rights of positive people through advocacy and engagement. We’ll be tackling important issues such as criminalisation, stigma and discrimination. AIDS 2014 will see the gathering of the world's best minds in all areas of research, care and prevention. This is an incredible opportunity for our organisation to learn from our global counterparts, and share what we have learnt with them. Living Positive Victoria welcomes all people living with HIV to engage with the conference however they can. If you would like to volunteer, or find out how you can be engaged, call (03) 9863 8733 for more info.
what’s on ¢ Outrage HIV Justice Film Festival, 18-21 July, ACMI (outragefilmfestival. com) ¢ Beyond Blame: Challenging HIV Criminalisation, 20 July (beyondblame.eventbrite.com) ¢ ENUF Already: Voices of ENUF Exhibition, 19-24 July, Federation Square
¢ AIDS 2014 Candlelight Vigil,
22 July at Federation Square (aids2014candlelightvigil.com) ¢ STATUS the play, 22-27 July, Arts Centre Melbourne (statustheplay.com) ¢ More events check facebook.
Suite 1, 111 Coventry Street Southbank 3006 ) 03 9863 8733 ø livingpositivevictoria.org.au
PositiveLiving l 12 l WINTER 2014
Steppingoutof theserocloset Positive Life NSW made its debut at this year’s Mardi Gras parade after a long and noticeable absence of poz faces, reports Hédimo Santana. Not since 2000 has there been a visible poz presence in the Sydney Gay and Lesbian Mardi Gras parade. Why? Stigma, discrimination, and the possibility of sexual rejection if one is ‘outed’ are three reasons that immediately spring to mind. Is it any wonder then that poz people prefer to keep themselves behind the barriers at Mardi Gras. One may argue that it is up to people living with HIV to realise stigma and discrimination won’t desist unless you fight back. But the reality is that the serocloset is a safe place to be. When you have a chronic condition to nurture and nourish, the last thing you want is the added stress of unwelcome judgement (sometimes from your peers). Stigma and discrimination are the main reasons why positive people tend not to randomly disclose their status. Despite organisations like Positive Life NSW working hard to make living with HIV as normal as it can be, stigma and discrimination continue to persist and impact on positive people’s lives. So this year, after a few rather frustrating attempts at bringing people
from the president JANE COSTELLO Welcome to the latest edition of Talkabout – I can’t believe we’re half-way through the year already! Here at Positive Life we have had a busy few months, and this looks to continue with all the upcoming preparations for AIDS 2014 in Melbourne in July. As well as marching in the Mardi Gras parade, Positive Life NSW had its biggest stall and presence at Fair Day yet. We handed out more than 500 showbags, T-shirts and resources to the many people who came by to say hello. Our new Choose campaign — which highlights the advantages of being on HIV treatment — was launched at our World AIDS Day event by the NSW Minister for Health and Medical Research Jillian Skinner. The campaign has been a great success and acclaimed widely. While recognising that the treatment landscape has evolved and changed, we also appreciate that living with HIV is different
us. It felt really good to walk up Oxford Street with the Positive Life NSW banner and to be recognised, applauded and encouraged by the community. It could have been even better if the poz folks watching the parade had joined us, openly declaring their status in a “me too” moment of defiance against HIV stigma and discrimination. Let’s hope more poz people come forward to join our Mardi Gras entry next year.
You, me & HIV
together, Positive Life NSW had an entry in the Mardi Gras parade. Wearing the Choose Treatment campaign T-shirts and carrying campaign placards, a group of 20 staff, board members and volunteers walked Oxford Street to encourage people with HIV to choose treatment, and to play
an active and vital role in preventing HIV transmission. The funny thing was to witness the cheerful welcome from the poz faces in the crowd as we marched. Each section of the Golden Mile was populated by the very people that could have been parading with
for everyone and acknowledge people’s right to choose to delay treatment or not to treat. If you’d like a campaign T-shirt, contact our office on (02) 9206 2177, or visit our website to find out more: positivelife.org.au. This year has been a year of change for Positive Life NSW. At the end of March we said goodbye to our CEO Sonny Williams who is returning to New Zealand for family reasons. It has been an honour and a privilege to have worked with Sonny, and on behalf of the Board and staff we wish him well for the future. I would also like to extend a belated welcome to Craig Cooper as our incoming CEO. Craig has a long history with Positive Life NSW as a former VicePresident and Board member, and has worked extensively in the HIV sector. Please join with me in welcoming Craig back to Positive Life NSW.
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The Centre for Social Research in Health at UNSW is seeking to recruit poz/neg heterosexual couples to participate in its serodiscordant couples study, You, Me & HIV (individual partners are also encouraged to apply). The study aims to understand the everyday experiences and challenges of being in a relationship with mixed HIV statuses as well as help provide information that will help identify the needs of both HIV-positive and HIVnegative partners. ¢ If you’d like to take part, contact: Dr Asha Persson on (02) 9385 6414 or by emailing: firstname.lastname@example.org.
Positive Life NSW is a nonprofit community organisation working to promote a positive image of people living with and affected by HIV with the aim of eliminating prejudice, isolation, stigmatisation and discrimination. We provide information and targeted referrals, and advocate to change systems and practices that discriminate against people with HIV, their friends, family and carers in NSW. 414 Elizabeth Street Surry Hills 2010 ) (02) 9206 2177 or 1800 245 677 ø positivelife.org.au
PositiveLiving l 14 l WINTER 2014
Published on Jun 13, 2014
Positive Living, a quarterly magazine for people living with HIV in Australia, with the latest news on research, treatments, social and pers...