PositiveLiving A MAGAZINE FOR PEOPLE LIVING WITH HIV l SPRING 2013
HIV ACTIVISM THEN & NOW PLUS NEWS FROM
edItoR adrian ogier
(firstname.lastname@example.org) assoCIate edItoR david Menadue assIstaNt edItoRs stevie Bee, Vicky Fisher CoNtRIBUtoRs Miriam Chin, Jae Condon, tim leach, Neil McKellarstewart, alex Mindel, dr louise owen, shirleene Robinson, Peter Watts, Morgan Webert 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: december 2013 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: email@example.com 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 in this publication 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. CoVeR IMaGe ostIll. aCtIVIst IMaGes CoURtesy oF PosItIVe lIFe NsW
The antivirus protection program on my computer has expired. The company is offering a special deal if I subscribe for three years and I’m thinking, ‘Why should I waste my money? What if I’m not here in three years?’ It’s a silly thought, really. You can’t take your money with you. But I had similar feelings in the late eighties and early nineties when I had several AIDS-defining illnesses and was told I had a short time to live. These reflections came about from being diagnosed with a Non-Hodgkin Lymphoma in February. While my prognosis is promising — chemotherapy and radiotherapy fixing it for the present — there is still uncertainty lurking in my mind about whether it might return; and whether the treatments would still work if it did. To be terribly adult about this, getting a lymphoma after living with HIV for thirty years is no great surprise. Those of us who were diagnosed in the eighties had no (or ineffective) treatments. We know that those long periods of having low CD4 counts may have provided just the building blocks necessary for some non-AIDS defining illness to occur, albeit many years later. The big difference between having AIDS then and getting cancer now is the way society treats you.
Back to the future If resilience had a face, it would have a smile like David Menadue’s.
Having AIDS in 1984 was a trying experience because of all the fear and ignorance at the time. Many of us were openly shunned. I was fortunate to get understanding and support from my family and my workmates when I built up the courage to tell them. But there were also rejections, particularly from sexual partners. Having cancer is treated quite differently. I couldn’t help thinking that my lymphoma diagnosis was ‘respectable’ by society’s standards. I didn’t go through long nights wondering if I should tell people about my cancer diagnosis. I didn’t feel I had much to lose whereas the potential for rejection on revealing my HIV status was huge.
Preparation for the 20th International aIds Conference (IaC) aIds 2014 is well under way. IaC will be held 20-25 July at the Melbourne Convention and exhibition Centre. alternating years with the Ias conference, the IaC is the world’s largest regular health-related conference. It is expected to attract more than 14,000 delegates from over 200 countries and to gain significant media attention.
Photo lesley Podesta
Fortunately I have received support from those that really count for both illnesses. And I’m sure it is this as much as anything else that has helped me to survive both. During my hospitalisation, I was visited by an old friend who I hadn’t seen for ages. He was an
UPDATE financial benefits. the standard early-bird fee is Us$785. this rises to Us$940 on 20 February and again to Us$1045 on 2 May. there are also discounts for those under 26 years of age (early-bird is just Us$235). GET INVOLVED the local secretariat in Melbourne is constantly recruiting. applications to volunteer at the conference will open on 1 april. Volunteers
IMPORTANT DATES Registration for delegates opens on 1 december. When paying early, there are considerable
CONTRIBUTORS (FRoM leFt)
get free registration for the conference and are expected to volunteer for four hours a day. a full scholarship includes registration fee for the conference, travel, accommodation and a daily living allowance (20-25 July). applications will be open from 5 december to 6 February. PRECONFERENCE the International Indigenous Working Group on hIV/aIds (IIWGha)
inpatient and hooked up to a drip. He has been HIV positive for about ten years and I wondered why he had become ill. ‘Oh, I haven’t been on treatments at all,’ he said. ‘I just didn’t want to do them,’ he told me. ‘My CD4s got down below 20 but I’ve started treating now and my counts are slowly going up.’ He explained how his life over the past 12 months had been filled with chronic skin complaints, one of which had caused his hospitalisation. But it hadn’t occurred to him that these warning signs might be HIVrelated. I couldn’t understand how my friend had left things so late and only hope that his immune system recovers sufficiently to prevent further illness and hospitalisation. For me, the arrival of effective HIV treatments in the midnineties was an absolute blessing. It was then that I stopped thinking about dying and started planning for the future. I had seen what no treatments had done to my friends who had died so I needed no convincing to take the pills. If I was diagnosed HIV positive today, I would start treating as soon as possible. For me, a few pills a day is the best antivirus protection I can have. will hold an indigenous preconference in sydney on 18-19 July 2014. the conference will provide a space to network and share ideas relating to Indigenous people’s experiences of hIV. MORE INFO For a guide to the key dates and deadlines, including those for abstracts, scholarships and volunteering visit aids2014.org/. so you can keep up with all the latest community news, NaPWha produces a monthly IaC newsletter. Go to http://ow. ly/o7nlg for september’s.
Miriam Chin introduces us to a delicious risotto made from this year’s superfood, quinoa l Neil McKellar-Stewart reports on early treatment and hIV/hCV coinfection from Ias 2013 l David Menadue reflects on life and death, then and now l Adrian Ogier compiles the news from home and Ias 2013 l Dr Louise Owen explains hepatitis B and why we should be vaccinated l Shirleene Robinson revisits our activist past l Morgan Webert demonstrates how massage can relieve more than just aches and pains
PositiveLiving l 2 l sPRING 2013
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travel restrictions still an issue
At least 44 countries still have some form of entry, stay, work or residence restrictions for people with HIV, according to data presented at a session on HIV-related travel restrictions at the International AIDS Society conference (IAS) 2013 held in Kuala Lumpur in July. We heard from Owie Franco who was tested for HIV without his consent when he moved to Saudi Arabia for work, was then detained for two weeks before being deported back to his home country of the Philippines. ‘I was not treated with dignity,’ he said with winning understatement. The satellite session heard how scientists and clinicians can help change such problematic laws, policies and practices through advocating for a rational, rights-based approach. ‘Such laws and policies have nothing to do with public health, they are about political expediency,’ stated Malaysian political activist, Marina Mahathir, during a lively discussion on strategies to improve human rights and migration issues for people living with HIV. Owie Franco speaking during a satellite session ‘Discrimination does nothing good for anyone,’ she on ‘Steps towards zero discrimination’ concluded.
Two new studies for Sydney interviewed separately. Contact Asha Persson ((02) 9385 6414 or firstname.lastname@example.org). Find out more at nchsr.org/youmeandhiv. All participants receive a $50 voucher.
The Centre for Social Research in Health at UNSW (previously the National Centre in HIV Social Research) is conducting two important studies in the Sydney area and researchers are looking for PLHIV to interview. An interview can take between one and two hours, you can nominate the time and place, and all information you provide is treated as confidential.
n Treatment as Prevention is studying what HIV positive gay men in Sydney think about the concept of treating people early in order to prevent the sexual transmission of HIV. The researchers want to speak to HIV positive gay men aged 18 or older living in the Sydney area. They are interested in hearing the views of men who are not on treatment as well as those who are. Contact Anthony (0438 203 159 or email@example.com. edu.au). Reimbursement for outof-pocket expenses (such as travel costs) and time spent is available.
n Youme&hiv is the first major study into the social and sexual experiences of being in a serodiscordant relationship. Researchers would like to speak to gay and heterosexual couples who live in Sydney, Central Coast, Hunter/Newcastle or the Northern Rivers. Both partners can participate but will be
legal barriers to effective campaigns remain epidemics within marginalised communities. These laws include those that criminalise HIV non-disclosure, exposure and transmission; laws against sex work, sodomy or homosexuality; and the criminalisation of people who use illegal drugs.
The entry inhibitor hIV is unable to replicate by itself, so needs a host cell to be able to reproduce and make more hIV. that host cell is the human Cd4 cell, also called a t-cell. to begin this replication cycle hIV must first enter the Cd4 cell, and this entry process involves a number of stages. hIV first needs to attach to a Cd4 cell. this happens when proteins on the surface of hIV attach to proteins on the surface of the Cd4 cell. hIV then needs to bind to a co-receptor on the surface of the Cd4 cell. there are two co-receptors that hIV most often uses and they are called CCR5 and CxCR4.
If hIV successfully binds to one of the co-receptors, chemical messages are released to signal the surface membrane of hIV to fuse or bond with the membrane of the Cd4 cell. hIV then releases its own genetic material into the Cd4 cell. once inside, the genetic material of hIV tricks the Cd4 cell into becoming an hIV factory to make many more copies of hIV. one antiretroviral drug that is highly effective against hIV at this point in its life cycle is maraviroc. In a clinical trial called MeRIt, people taking a regimen containing maraviroc experienced greater increases in
Professor of Law, Aziza Ahmed from the USA, cited one outrageous example. In her home country, spitting and biting continue to be used as a reason to criminalise people with HIV despite the fact that neither activity poses any transmission risk.
their Cd4 counts compared to those taking another combination. the first entry inhibitor available in tablet form, maraviroc is also easy to take and has a very low side effect profile. Before someone can HIV attaching to CD4 cell, at right take maraviroc the CCR5 receptor are termed they need to have a tropism test. R5. If someone has only R5 tropic different strains of hIV use hIV then they can use maraviroc different coreceptors to attach as part of their treatment to Cd4 cells depending on their combination. tropism. Viruses that use only
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effective and high-quality HIV care, treatment, and service programs. ‘We need an environment that does not discriminate, that does not stigmatise, and does not marginalise the very people who need our support and care,’ she said.
Countries where there are no such laws, or where a harm reduction approach is taken, tend to have more successful HIV programs, she said. She called on delegates to accept responsibility for creating a legal and policy landscape that enables the implementation of
TREATMENTS UPDATE WITH JAE CONDON
Photo RUssell KIGhtley
Rather than helping to slow the spread of HIV, the current legal and regulatory terrain is actively working to undermine prevention and treatment projects. Many countries still enforce punitive laws, which end up depriving people of HIV care and perpetuate concentrated
It is thought that most people who are treatment naive have R5 tropic hIV, and therefore would benefit from maraviroc. Unfortunately, it is currently only available on the PBs in australian for people with treatment experience, i.e., those who need to change drugs. however, there are applications in process to have maraviroc approved for people starting treatment for the first time. the drug is also being studied for use in the prevention of hIV transmission in pre-exposure prophylaxis (PreP), microbicides and in vaginal rings.
High-grade pre-cancerous anal lesions are more likely to regress than progress, according to recent Australian research. The study at St Vincent’s Hospital in Sydney involved 574 men, three-quarters of whom were HIV positive, and only 1% of patients progressed to anal cancer, compared to a regression rate of 24%. Incidence of anal cancer has increased in recent years among HIV positive people, with rates highest among gay and other MSM. There is a trend, particularly in the US, to aggressively treat men with high-grade pre-cancerous anal lesions; however, these findings indicate that in many cases this approach may be unnecessary. In the Sydney study, researchers found that they frequently spontaneously regressed. ‘Prospective studies to delineate risk factors and biomarkers that predict those at highest risk of progression to cancer are needed so that intervention can be targeted, and avoided in those for whom it is unlikely to be of value,’ conclude the authors. The HIV positive community in Papua New Guinea has lost one of its greatest advocates. In July, following a period of sickness and admission to Port Moresby General Hospital, Helen Samilo died, aged thirty. helen samilo was one of the country’s first hIV positive activists and a founding member of the nation’s PlhIV organisation, Igat hope. as Igat hope’s first female president, helen led the organisation at a critical time when a large and growing constituency expected much of their newly established group. Under helen’s leadership Igat hope developed its structure and focus. It also developed a strong public profile, thanks largely to her generous and personable nature. helen went on to become Igat hope’s advocacy and programs officer and helped build the nation’s network of PlhIV organisations. she spent several
‘The best and worst of times’
‘It is the best of times and the worst of times,’ said Judith Auerbach from the San Francisco AIDS Foundation at a session on the future of HIV prevention among gay and other men who have sex with men (MSM). ‘We have countries passing same-sex marriage at the same time as others are toughening laws against same-sex behaviour and HIV transmission,’ she said. ‘On top of that, we have gay men being oppressed by norms on beauty within their own communities. All these are issues that need our attention.’ Sessions dealing with gay and MSM issues were evident at IAS 2013, in pleasant contrast to the fact we were in a Muslimmajority country famous for its anti-gay propaganda. Late last year the Malaysian government endorsed a how-to guide for parents on how to recognise gay ‘symptoms’ in their offspring (one of which, apparently, is wearing v-neck t-shirts) and the steps they could take to ‘correct’ them (at homosexual rehab centres, for example). But to be fair, Malaysian law forbids anal or
oral sex between anyone — gay or straight — and public displays of affection between heterosexuals are equally taboo. So, it was good to see Malaysia’s gay and positive community represented at the conference. Making a particularly courageous step was the one man who spoke openly at a plenary of his experiences living with HIV in such a politically hostile environment. Currently, about 85,000 people are living with HIV in Malaysia, 90% of whom are male. Reportedly, homosexual transmission accounts for just 2.5% of HIV cases, while the HIV prevalence amongst MSM could be as high as 13%. The majority of cases are attributable to injecting drug use (IDU); however, harm reduction programs since 2005 have halved the number of IDU cases and sexual transmission now supersedes IDU as the cause of new infections. Malaysia provides affordable clinical care through its public health system, including free first-line antiretroviral treatment. ‘Very little government funding goes directly to
prevention amongst MSM,’ said B. Talhah, a member of the HIV positive MSM community. HIV stigma is a big deal in Malaysia but, as was noted by one American panellist, it is equally alive and well in countries where laws are more lenient. Dede Oetomo from Indonesia spoke about the diversity of MSM in South East Asia, how many are married and that ‘out’ gay men make up only about 3% of the total MSM population. The community is changing, he said. Social media means that men can meet up more easily. While these networks can perpetuate HIV transmissions they can also be harnessed to encourage behaviour change and risk reduction. ‘Treatment as prevention has biological plausibility for gay men,’ said Ken Meyer from Harvard Medical School. ‘But we need more data on its application within this population.’ The new WHO guidelines are based on the mainly heterosexual HPTN 052 study where only 37
A tribute to Helen years as a valued employee of anglicare stopaIds and did pioneering work in the torres strait on behalf of the Queensland health department. to all these tasks she brought her considerable expertise and personal charm. one of her greatest contributions was as Igat hope president during PNG’s first national conference of PlhIV, held in November 2008. she was the public face of this important event and in her opening address said: ‘This event reminds me of the hardships that people living with HIV and AIDS are facing today, since HIV was first diagnosed in our country 21 years ago. The long journey since then that has brought us here, today together, marks the significance of that time that each
person living with HIV and AIDS has taken, as a challenge to survive, not by the choices of men, but by their strong will and determination that is driven in us to rise to the ever challenging and changing world.’ helen also appeared in a documentary about hIV on PNG television, giving the virus a very human dimension at a time this was greatly needed. her quiet dignity and courage no doubt helped change public perceptions and must have made life a little easier for countless people living with hIV. helen was also a talented musician and would often share her gift of music with friends and colleagues. she was a regular visitor to australia and a great friend of NaPWha, which sent
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gay couples were involved. ‘While you are very unlikely to transmit HIV if you are undetectable,’ he says, ‘every encounter is different.’ And a lot relies on adherence, he added. ‘We do know that pre-exposure prophylaxis (PrEP) works,’ added Ken, ‘so why the slow uptake?’ PrEP studies, such as iPREX, showed a 44% decrease in HIV transmissions amongst 2499 HIV negative men. This increased to 54% when there was a measurable amount of drug in blood to greater than 90% when adherence was really good. ‘We assume that if we build a better drug then they’ll use it,’ said Ron Stall from the University of Pittsburgh. ‘We need to do a lot more work if we expect HIV negative men to take biomedical interventions seriously. We need to focus more on building their resilience,’ he suggested. ‘It is time for a global gay men’s health movement that focuses on our psychosocial health. We need to de-silo HIV and seriously address substance use issues,’ he added.
has too few hIV positive advocates so the loss of each is a personal and community tragedy. We must ask what else we can do to keep people with hIV alive in PNG. despite hIV treatments being free and, at least in Port Moresby, accessible, more needs to be done. all sectors – government, community, faithbased, donor – must work together to support access to treatments, and to provide support and encouragement for the people taking them. helen samilo is survived by her husband and three daughters. tim leach
Photo tIM leaCh
Anal pre-cancers often go away
hIV PReVeNtIoN aMoNG Gay MeN
this message to those gathered for her funeral: NAPWHA remembers Helen as a true leader, a wonderful person and great advocate. She was talented and courageous. Helen was an inspiration to many, many people here in Australia. She will be greatly missed. helen’s death prompts us to reflect on the precariousness of the PNG response. the country
n tim leach is a development practitioner who for many years has worked closely with the national organisation for people living with hIV in PNG, Igat hope. tim has undertaken this work on behalf of NaPWha alongside many NaPWha employees and volunteers.
Reduced-dose efavirenz just as good Lowering the dosage of efavirenz from 600 to 400mg in an antiretroviral regimen doesn’t compromise efficacy, according to data presented at IAS2013 by Rebecca Puls from The Kirby Institute in Sydney. Globally, efavirenz is currently the most widely used antiretroviral agent — it’s in the
fixed-dose combination pill, Atripla — and this finding has the potential to substantially reduce treatment costs. Neuropsychiatric side effects are common and can be particularly troublesome for people with existing psychiatric problems. This study showed that the lower dose was just as effective
IAS 2013 in all treatment scenarios but that there were significantly fewer side effects attributable to efavirenz at the 400mg dose. ‘How these results translate into care for people with HIV is usually the realm of treatment
guideline committees who have national, regional or perhaps even global jurisdictions,’ says Sean Emery, also from The Kirby. ‘We would strongly recommend that people taking efavirenz-containing regimens of ART do not change the regimen that has been prescribed by their doctor,’ he adds.
Cambodia on track to meet UN targets Cambodia is one country determined to meet the United Nation’s goal of virtually eliminating new HIV infections by 2020. A low-income country with high rates of HIV, Cambodia has systematically rolled out treatment and care to their most affected populations: people who inject drugs, sex workers, gay and other men who have sex with men (MSM) and trans women.
Mailbox Vitamin C and indinavir Thank you for another great issue of Positive Living. It’s always a pleasure to read. However, I was concerned to read the suggestion to take high-dose vitamin C supplements in the article ‘Tips to Beat the Winter Willies’. Large doses of vitamin C (>1000mg/ day) have been shown to reduce indinavir concentration, and it is generally recommended to avoid such high doses when taking protease inhibitors (PIs). Though research into this interaction is limited, it is best to avoid any potential for harm by advising against high dose supplementation. Miriam Chin, Nutrition development division, the albion Centre The only antiretroviral we could find that is contraindicated with high dose vitamin C is indeed indinavir (Crixivan); although this drug is prescribed rarely nowadays. That said, before taking any supplementation — even short term — it is good to discuss it with your health care provider. — Editor
‘If we reach the hidden populations, then they are no longer hidden,’ Dr Mean Chhi Vun told delegates in the opening plenary at IAS 2013. Dr Vun has headed Cambodia’s HIV response for over a decade and, prior to that, was responsible for rebuilding the country’s health system after years of civil war. By adopting an approach that includes a range of prevention methods including treatment as
prevention and by boosting care services, new HIV infections in Cambodia have plummeted from an estimated 20,000 annually in the early 1990s to around 1,300 in 2012. The country recognises it still faces tremendous challenges, particularly in reaching all segments of their affected populations within what is still a fragmented health system. They are looking to sharpen
epidemiological targeting to include more specific community groups. They want to simplify referral systems and plan on introducing finger-prick HIV testing to make ‘test and treat’ a more streamlined operation. The mobilising of the community under a single command-and-control strategy does seem more possible in a socialist state, but these results are no less remarkable for it.
Who favours earlier treatment Prior to the opening of IAS 2013, the World Health Organization (WHO) launched its new Consolidated Antiretroviral Guidelines. WHO now recommends that everyone initiate treatment at CD4 counts of 500 or less — up from its 2010 recommendation of 350 (and 200 before that) — and that antiretroviral therapy (ART) be provided, irrespective of CD4 count, to all children under five years, all pregnant and breastfeeding women, and anyone in a serodiscordant relationship. It also recommends the same first-line combination for everyone: ideally a once-a-day fixed-dosed of efavirenz and tenofovir with either emtricitabine or lamivudine. Switching to these guidelines will increase the eligibility for treatment from 16.7 to 25.9 million people globally. Currently, around 9.7 million people are on ART – 1.6 million more than in 2011. Between 1996 and 2012, ART prevented 4.2 million deaths. Over the same
period, prevention of mother-tochild transmission averted more than 800,000 children becoming positive. The WHO guidelines are clearly designed to roll out as much treatment to as many people in the simplest way possible way and are more applicable to a public health model of care than the one we have in Australia. But, hopefully these new guidelines will encourage more PLHIV to enter into care including those with counts above 500. The fact remains that too many people are starting treatment too late. In Asia the average CD4 count at initiation is just 100. Even in Australia, where the starting guide of 500 has been around for some time, our median CD4 count at initiation still sits at just 294. Removing any CD4 count level as criteria for treatment initiation is something we are in the process of doing in Australia. A proposal to remove the current 500 CD4 restriction on the HIV s100
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prescribing criteria is currently before the Pharmaceutical Benefits Advisory Committee to be tabled at its November meeting.
Same old message A Living Longer with HIV workshop at IAS 2013 highlighted some of the complexities many PLHIV face as they age. Panellists presented case studies illustrating the impacts of mental health and depression, cardiovascular disease and liver health on older PLHIV. As well as being on treatment, the take home message for reducing the risk of developing co-morbidities continues to be the importance of maintaining a healthy lifestyle including exercise and a balanced diet. Social networks and peer support systems as contributory factors to living longer (and better) with HIV were also raised as valuable contributors to maintaining good health.
things you might not know about Greg louganis We all know Greg louganis is a champion. he won diving gold at the 1984 olympics, then, prior to the 1988 olympics, he tested hIV positive and got concussed in the tryouts only to go on to win gold again. to top that, he came out publicly as hIV positive, which cost him most of his sponsorship deals; plus he had to put up with idiots talking about ‘blood in the pool’. his autobiography, Breaking the Silence was on the New York Times bestseller list for five weeks. When he came to australia recently, Positive Living asked Greg louganis to tell us some things we might not know about him. the important part that dogs play in his life was one of the things he shared. ‘they are my family,’ he told us. ‘But I only have one at the moment. a Jack Russell terrier called dobby.’ Greg has competed in dog agility competitions with his numerous dogs over the years. he has even written a book: For the life of your dog: a complete guide to having a dog from adoption and birth through sickness and health. yoga and meditation are also important to him. Greg has been a yogi for nearly 18 years, ‘although meditation in some form has been a part of my practice all my life,’ he told us. Practising helps him gain strength ‘physically, mentally and emotionally.’ It gives him the space to explore his imagination and to develop ideas. ‘Plus, it relieves stress,’ he says. ‘there are all forms of yoga, so anyone can find a practice to suit their bodies and minds.’ thank you, Greg louganis. It’s hard not to like someone who likes dogs and yoga.
These impressive findings highlight the considerable benefit of starting treatment when CD4 counts are still relatively high, and conversely suggest that normal immune functioning is unlikely to be restored, even after very long periods of treatment, when delayed. The authors suggest that PLHIV who commence treatment when their CD4 counts are high may be better candidates to benefit from a therapeutic vaccine against HIV and/or drugs, which are designed to purge viral reservoirs; and thus be better set up for any ‘functional’ cure that may come along in the future.
Views from Malaysia Neil McKellar-Stewart reports back from the International AIDS Conference held in Kuala Lumpur in July.
WO exciting presentations on the optimal time to start treatment were delivered by French researchers at IAS 2013. The first paper was on how people who started treatment when their CD4s were above 500 achieved better reservoir depletion and T-cell count restoration. It was presented by Laurent Hocqueloux on behalf of the ‘Coordinated Action on HIV Reservoirs’. This was the team who reported on the Visconti cohort, now called post-treatment controllers (PTCs). These are PLHIV who commenced treatment within four months of seroconverting then stopped it completely after about 36 months, and after an average of seven years off treatment still had undetectable viral loads and high levels of restored immune function. About 15% of the population are thought to be able to do this. To date, none of these PTCs need ART to control their HIV. Off therapy, they are able to maintain and, in some cases, further reduce an extremely low viral reservoir. And this is despite the fact that none of them were genetically well-suited to control HIV progression. This team also demonstrated in another group that very early treatment (within 4 months of seroconversion) drives down viral load to a level, which indicates ‘deep depletion’ of HIV reservoirs: HIV-DNA of less than 2.3 log10 copies/106 peripheral blood mononuclear cells (PBMCs). The effect on HIV-DNA was much more profound in those treated very early compared with those treated later in their HIV infection and in addition, HIV-DNA continued to decline for over 10 years of continuous treatment. However, the latest research this team reported at IAS 2013 involved PLHIV who started treatment later, known as the ‘chronic’ phase of infection. They wanted to compare how well people responded to treatment when they started at different CD4 counts.
Treating above 500 THE EVIDENCE IS BUILDING Firstly, they decided what an ideal result would be and called this measure the optimal viroimmunological response (OVIR). Features of an OVIR are: restoration of CD4 cell count to greater than 900; a CD4/CD8 ratio greater than1; and HIVDNA reduced to less than 2.3 log10 copies/106 PBMCs (i.e., ‘deep depletion’ of viral reservoirs). The participants in this study started treatment at three different CD4 counts: above 500; 200-499; and under 200. Only those who achieved and sustained an undetectable viral load (less than 50 copies) were included. Just over 300 PLHIV were
followed for a median of 3.7 years. The characteristics of those in the three CD4 ranges were similar. Most of them were male under the age of 40 who started with a viral load between 40,000– 200,000 copies/mL. The study found that HIVDNA correlated negatively with CD4 count during treatment, that is lower HIV-DNA was correlated with higher CD4 counts. All participants responded well to treatment and, at last study visit, the following were the key immune-virological parameters for each range of starting CD4 count (respectively ≥ 500, 200499, <200): last CD4 count:
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1011, 662, 515; last CD4/CD8 ratio: 1.25, 0.88, 0.66; and last HIV-DNA log10 copies/106 PBMCs: 2.51, 2.78. 2.91. The percentage of people in each respective CD4 category who had CD4s ≥900 was 67%, 12% and 6%. The percentage with CD4/CD8>1 was 73%, 36% and 16%. The percentage with HIVDNA<2.3 log10 was 39%, 21% and 11%. The percentage who met all three OVIR objectives (with CD4s≥900) was 30%, 3% and 0%. So, those who commenced treatment when their CD4 counts were above 500 were 56 times more likely to reach the study endpoint.
he second presentation was made by Antoine Chéret on behalf of the OPTIPRIM trial team. Their rationale is that very early treatment with a potent and well-tolerated 5-drug regime will reduce the HIV reservoir, better restore immune function and decrease inflammation and immune activation. Their trial had two treatment arms: an optimised 5-drug arm using darunavir/ritonavir + tenofovir + emtricitabine + raltegravir + maraviroc; and the control arm using darunavir/ ritonavir + tenofovir + emtricitabine. The primary endpoint of the trial (at 24 months from treatment commencement) was HIV-DNA log10 copies/106 PBMCs (which indicates greatly reduced HIV reservoirs). Other characteristics investigated were: changes in HIV viral load; changes in CD4 cell counts and CD4/CD8 ratio; how well drugs were tolerated; HIV levels of HIV in semen and in rectal tissues; and changes in immune functioning. The 90 trial participants were mainly gay men, median age 36, and almost all had symptoms of seroconversion illness or another indication of acute HIV infection. The median length of infection was just 35 days, median VL was 250,000, median CD4 count was 472 and HIV-DNA was 5.4 log10 copies/106 PBMCs. By the 12 month mark, in both arms of the study, the percentage of participants achieving undetectable viral load had increased from 8% in the first month to 93%. CD4 counts rose to a median of 707 and the median CD4/CD8 ratio was now 1.13. In terms of HIV genetic material in blood, HIV-DNA had fallen about 22-fold; 25% of
ecent research out of the Options Project in San Francisco General Hospital reached the same sort of conclusions. In this study, PLHIV who had been diagnosed within six months of infection and treated immediately had significantly lower T-cell activation, a 4.8-fold lower HIVDNA level and lower cellassociated HIV-RNA, compared to those who delayed treatment. The authors suggest that the extended high levels of HIV in untreated people prior to treatment may result in higher ongoing damaging immune activation and inflammation. Extended HIV replication before treatment may establish an irreversible pro-inflammatory environment, perhaps by damaging gut tissues or by establishing more active cycles of HIV replication. Taken together, these two IAS presentations provide support for the benefits of treatment both very early in HIV infection or before CD4 cell counts have fallen below 500. In the current Australian context where more regular and frequent testing is being recommended for people at risk, and particularly sexually active gay men, this research is suggesting that if people find that they have been infected with HIV, there are considerable long-term benefits in treating as soon as possible.
ew cases of hepatitis C (HCV) are still being seen largely amongst people who inject drugs (PWID). However, in recent years it has become more recognised that HCV is also passed on sexually and that a disproportionate number of people living with HIV (PLHIV) are also living with HCV. Between 2004 and 2008, the Australian Trial in Acute Hepatitis C (ATAHC) found that around 30% of those who had recently acquired HCV were also HIV positive, and that 15% of those new HCV infections were attributed to male-to-male sexual activity. In Australia, around 13% of PLHIV are also living with HCV. This estimate is similar in the USA, while in Europe up to 25% of PLHIV also have hepatitis C. Globally, the figures vary widely across different geographic regions. Researchers taking a mobile medical clinic across the American urban northeast discovered this recently. Within this population, they found that 33% of those diagnosed with HIV between 2003 and 2011 also had hepatitis C and that gay and other MSM were over three times more likely to have both infections compared to heterosexuals. In some areas of Eastern Europe and Central Asia (former states of the USSR) the rates of coinfection are higher still. In her IAS 2013 plenary lecture, Karine Lacombe from the Université Pierre et Marie Curie in Paris, claimed that HIV/HCV coinfection constitutes a new epidemic, and provided an overview of the harmful and synergistic effects of having both. Put simply, having both viruses complicates your clinical care considerably. The combination increases the chance of liver fibrosis and impairs natural killer cell anti-fibrotic activity. Endstage liver disease is the highest cause of death in people who are living bi-virally. But it’s not all bad news. Treating HIV can restore your anti-HCV T-cell response, which is a good reason to initiate it early. And unlike HIV, HCV is a curable disease because it doesn't integrate into the host genome, so there are no archived mutations. Plus, when you add the new first-generation direct-acting antivirals, protease inhibitors boceprevir and telaprevir, to standard treatment peginterferon and ribavirin it can shorten
The new epidemic? HIV AND HEPATITIS C COINFECTION treatment time and you’ve got a better chance of curing the HCV. Results of trials with secondgeneration protease inhibitors are also very encouraging. Both naive patients and relapsers showed an 80% sustained virological response (SVR) with simeprevir and almost 90% early virological response with faldaprevir Treating people with HCV to reduce new transmissions is a real possibility in the near future; however, this is a monumental task as globally around 185 million people are living with the virus. A range of newer drugs is also in the pipeline, and hopefully some of these will eventually be licensed for use. Treating and clearing HCV infection still results in a health burden, as there is an increased risk of liver cancer, specifically hepatocellular carcinoma. So, ongoing care and monitoring of liver health is essential.
nother presentation on HCV and HIV coinfection amongst gay and MSM was delivered by Thomas Martin on behalf of a team from Chelsea and Westminster Hospital in London. He began with a fairly gloomy overview. Having both infections reduces spontaneous clearance rates of HCV (PLHIV account for only 20% of all cases). HCV RNA set points tend to be higher, which increases the chance of transmission. Having both also increases the chance of progressing to cirrhosis faster.
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And while treatments are improving, there is still a reduced success rate among PLHIV. Liver disease is a major nonAIDS cause of death among PLHIV, accounting for 9% of all deaths in the largely treated D:A:D Cohort (2009 to 2011). Viral hepatitis infection (mainly HCV) was the main contributor to these deaths. Sexual transmission of HCV in HIV positive gay men in Western Europe, North America and Australia has been occurring since the mid-1990s. But it has been increasing, rising steeply from 2005, and currently up to 5% of positive gay men may be infected annually. The opposite is the case for PWID. A recent analysis of the Needle and Syringe Program (NSP) in Australia revealed that between 1995 and 2010 the number of new cases of HCV in people using NSPs had halved. Some risk factors have been identified for HCV transmission include ulcerating genital infections, unprotected anal intercourse and activities such as use of sex toys, group sex, fisting and recreational drug use. A major German study recently confirmed that blood – even in imperceptible amounts – is the critical medium of transmission, noting that HCV remains transmissible at room temperature for the order of 16 hours. A UK study specifically addressed HCV reinfection rates
participants had decreases greater than 2.0 log10 copies/106 PBMCs; and 51% had less than 200 copies/106 PBMCs indicating very low levels of HIV integrated into their key immune cells. The study team concluded that very early commencement of HAART has a profound impact on HIV reservoirs and leads to better immune restoration compared to commencing treatment during later stages of HIV. They suggested that the immune benefits seen at 12 months probably reflect early protection of memory T-cells and a reduced HIV reservoir. In this study adherence was well maintained and tolerance of the treatment very good. This is good news for those PLHIV who are diagnosed very early, and suggests that by treating early, immune function can be preserved and HIV seeding into reservoirs reduced, again suggesting that such people may benefit from therapeutic vaccines and future attempts to flush out their HIV reservoirs.
in 191 coinfected gay men who had either been successfully treated for acute or chronic HCV or who had spontaneously cleared their HCV. Overall, 23% of these gay men were reinfected within two years, and were treated a second time. Of the 24 who cleared their HCV a second time, eight (33%) were reinfected again. This represents a very high risk of ongoing reinfection in gay men with HIV who are diagnosed with HCV infection. Treatment was generally successful for those who were reinfected, with SVR of 73% for HCV genotype 1 and 4 and 100% for genotypes 2 and 3. Standard treatment (pegIFN/RBV) was used for all patients in these clinics. Spontaneous clearance of HCV reinfection was 20%, which is consistent with primary (first) HCV infection clearance. The study also demonstrated weak evidence for any protective immunity after spontaneous clearance. This study confirms findings from previous smaller studies in two large HIV clinics in Amsterdam, which found that overall 33% of positive gay men who cleared their HCV became reinfected. The authors recommend PLHIV who have previously cleared their HCV to ensure that subsequent reinfection is detected and treated early. The British HIV Association (BHIVA) guidelines for the management of hepatitis virus and HIV coinfections issued earlier this year recommend HCV antibody testing every three to six months for gay men who remain at risk following clearance of an initial HCV infection. In Australia, the 2010 Sexually Transmissible Infections In Gay Men Action Group (STIGMA) Guidelines recommend annual HCV testing for HIV positive MSM, recognising that HCV may be acquired during sex. These presentations add further to the growing evidence base that HCV may be acquired sexually and that for PLHIV the course of HCV disease and its treatment may be more complicated. Numerous PLHIV organisations have information about reducing the risk of acquiring HCV through sex. This is one recent resource: aidsmap. com/How-hepatitis-C-is-passedon-during-sex/page/2582499/ n References can be found in the web version of these reports at napwha.org.au/pl
ustralia’s first AIDSrelated death was in Melbourne in July 1983. Not only has the world changed considerably since then but the shape of activism has changed too. This thirtieth anniversary is an opportunity to look back on the history of HIV activism and consider its future. The people who gathered together in the early and mid1980s were part of a much less connected world. Their information came from overseas contacts, travel and gay publications. From 1982 onwards, overseas sources suggested that gay men were suffering mysterious symptoms of compromised immune systems. Growing numbers of men were being diagnosed with the previously rare form of cancer, Kaposi’s sarcoma, and other devastating opportunistic infections. When HIV first reached Australia, activism was centred on AIDS councils, which formed very quickly. These organisations were not exclusively gay and lesbian but their membership came from this community. The Victorian AIDS Action Committee (now the Victorian AIDS Council) met for the first time at Melbourne’s Laird Hotel in July 1983. Similar AIDS councils were established in Queensland, South Australia, Western Australia, Tasmania, NSW and the ACT between 1983 and 1985. The Australian Federation of AIDS Organisations (AFAO), founded in 1985, served as a national umbrella organisation. These community-based organisations drew heavily from New York and San Francisco models. Individuals from a wide range of backgrounds, including some marginalised groups, joined together to work with bureaucratic structures to formulate a response to HIV in Australia in the 1980s. Many of those dealing with the toll of the epidemic had been poorly treated by both government agencies and medical authorities in the past.
INVALUABLE VOLUNTEERS The Australian response to HIV in the 1980s has justifiably received much international acclaim. Many of those who remember the early years of the AIDS epidemic reflect on the way that AIDS Councils were staffed by volunteers. In an oral history interview held by the National Library of Australia, academic and writer Dennis Altman
describes the individuals who led these Councils as ‘heroes’. The federal government was largely supportive of these organisations and was prepared to empower individuals to educate others about HIV. During the 1980s and 1990s, office bearers in AIDS Councils, alongside community volunteers including many who were living with HIV, manned telephones and gave talks to organisations such as Lifeline and state and regional health services. Members of the heterosexual community, including some women whose sons had been affected by HIV, also gave time and energy as
COMMUNITY INVOLVEMENT HIV activism in the 1980s focused on very practical concerns. The medical profession was still learning about the virus so the earliest activism in Australia centred on making information about HIV available and supporting those who were directly affected. Many of those who lived through these years describe the difficulties of losing friends and lovers, while attempting to manage their own health and educate others. Despite living through a time many liken to a war in terms of the loss of lives, many HIV activists remember the 1980s as a
generally had a better relationship with the federal government than activists in the United States, tensions became more obvious as the epidemic continued. People who were living with HIV became increasingly concerned that their needs and concerns were not being voiced. NAPWHA’S BEGINNINGS A very significant event for HIV activism occurred with the formation of the National Association of People With HIV Australia. The organisation can trace its origins to the 1988 national AIDS conference in Tasmania, when, during the
activists and government focused on access to HIV medications such as AZT. This medication was initially thought to slow the frequency and severity of AIDSassociated opportunistic infections. In 1990, the tension between AIDS activists and government erupted when protestors interrupted a speech by Federal Health Minister Brian Howe at the National AIDS Conference, demanding that the process of approving experimental HIV medications such as AZT be fasttracked. At that point AZT was given only to people with T-cell counts below 200. This
a c ti v iS M activism
REVISITED It can be easy to forget just how difficult it was thirty years ago when HIV first hit Australia. After the initial shock subsided, our anger over inaction rallied us and bureaucracy took notice of the shouting. But what do we do today? Have we become couch potato slacktivists or are we just using new technology to suit the times? Shirleene Robinson investigates volunteers. There are numerous accounts of people across Australia doing what they could to assist, including bringing pots of soup into the headquarters of the Queensland AIDS Committee or spending days and nights caring for and nursing people dying of AIDS-related illnesses. Ken, who was living with HIV in Brisbane in 1985, volunteered with the Queensland AIDS Council in that year. He told The Courier Mail that he was getting valuable support from the organisation, felt he was playing a supportive role to others and was, in turn, receiving friendship and feeling less isolated.
time when a community pulled together. David Menadue explains that ‘the desperation of the times (the eighties) meant more hands were needed on deck to do things that governments had often not funded HIV organisations to do. ‘HIV organisations depended on volunteer workforces and community involvement was high. People wanted to help and that included rattling the cages of government when they weren’t listening to the needs of people who were dying or providing resources to communities-at-risk to try to stop new infections.’ Although Australian activists
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closing plenary, 20 activists took to the stage and demanded that HIV positive people be represented in the AIDS response. It was the first time in Australia that a group of people stood up and self-identified as HIV positive. This action led to the establishment of the National People Living with AIDS Coalition (NPLWAC) – an advocacy organisation with the primary mission of increasing positive representation on a national level and which, in the early 1990s, was renamed NAPWA (now NAPWHA). One of the major points of contention between Australian
contrasted with the US and Canada, where people living with HIV had access to the medication before they became sick. In Australia, people living with HIV were particularly concerned that access to medication was proving difficult and that HIV positive people were not being given more agency in the process of medical treatment. ACT UP The American activist group ACT UP, which had been formed by Larry Kramer in 1987, addressed the concerns of many Australian activists and particularly those of people living with HIV. On
took place across Australia. In the early morning, members of Melbourne ACT UP removed the flowers from the Melbourne Floral Clock, replacing them with white crosses. In Canberra, members of ACT UP held a candlelight vigil, stitched a memorial quilt panel and, most spectacularly, blew whistles in the House of Representatives, while two men jumped over the Public Gallery balcony into the chamber. Geoffrey Harrison, who was involved in the Canberra actions, recalls, ‘it was pretty amazing to see’ Parliament stopped. Collectively, the ‘D Day’ actions did generate considerable
“AIDS-contaminated blood” and worst of all, “innocent victims”‘. Throughout its most active period, ACT UP in Australia maintained strong links with the state-based AIDS councils and with activists who worked within bureaucratic structures. Many were involved in both AIDS councils and in ACT UP. Lloyd Grosse remembers using the office facilities of the AIDS Council of NSW to produce some work for ACT UP. In a notable campaign from 1991, members of ACT UP in Melbourne worked with members of the Victorian AIDS Council to protest the threatened closure of the Fairfield
a level of inspiration and a model to be adapted in an Australian context, was also on the wane. Ironically, the success of ACT UP in achieving respect and inclusion for people living with HIV meant there was no longer a need for the organisation. Once people living with HIV had fought successfully for their inclusion and empowerment in the medical treatment process, the need for ACT UP receded. SLACKTIVIST NATION? Two of the most important shifts in HIV activism have occurred relatively recently. In 1994 and1995, there was a significant Attendees at the third National Conference on HIV/ AIDS in Hobart in August 1988 took to the stage to openly declare their positive status and protest the invisibility of the positive community. TOP RIGHT Timothy Conigrave, Rob Lake, David Edler and Aldo Spina at an ACT UP rally in Sydney BOTTOM LEFT Keith Harbour arrested on the steps of Parliament House, Melbourne during an ACT UP demonstration in 1990. BOTTOM RIGHT D-Day protesters at Flinders Street Station on 6 June 1991 when members of ACT UP staged radical protests across the country, using the letter ‘D’ to represent the words deaths, drugs, delays and deadline. TOP LEFT
responsible for drug licensing and for AZT only being available for people with CD4 counts of 200 or fewer. Other chapters of ACT UP were launched in Melbourne, Brisbane, Canberra and Perth before the end of 1990. ACT UP was highly active across Australia in the early 1990s, with a range of protests, actions and zaps that varied in size and impact. One of ACT UP’s major campaigns took place on 6 June 1991, designated ‘D Day’. It was to draw attention to delays in the approval process for medication needed by people living with HIV. On this date, a series of coordinated protests
media attention both nationally and internationally and as Harrison remembers, ‘put our message out to other people’. ACT UP also drew attention to other issues, such as the treatment in the media of people living with HIV. In one press release from 14 August 1991, Sydney ACT UP asserted that ‘with a few outstanding exceptions, the Australian media has had a shameful record of reporting on HIV and AIDS issues . . . People Living with HIV and AIDS in Australia are daily insulted and disenfranchised by the media’s common use of terms such as “AIDS victim”, “AIDS carrier”,
Hospital, which had particular expertise in HIV treatment. By 1993 it became clear that the type of activism practised by ACT UP was in decline. Emotional exhaustion had taken a toll on many members. Others had been affected by ill-health or had died. The 1991 Baume Report had appeared to address many of the concerns ACT UP held about the approvals process and access to medication for people living with HIV. The development of new antiretroviral drugs in 1994 and 1995 also provided new hope and changed the focus of AIDS activism in Australia. Finally, ACT UP in the US, which had provided
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breakthrough with the success of combination therapies, which greatly extended the life expectancies of many people. The remarkable growth of the internet since the 1990s has also changed the way people organise and support each other. Some people criticise the state of activism in modern Australia, arguing that the country has become something of a ‘slacktivist nation’. Perhaps it is fairer to note that activism is still powerful but that its modus operandi has shifted. Many who were involved with AIDS councils, ACT UP or people living with HIV organisations in the late 1980s
now use the internet for communication and support. Both Geoffrey Harrison, who was very involved with ACT UP in Melbourne, and Lloyd Grosse, who was involved with the AIDS Council of NSW and ACT UP, view the internet as a positive way of organising, maintaining contact with friends from the past and reducing isolation. David Menadue believes that activism is alive and well in Australia today. ‘If you accept that activism can be done within effective government-funded community structures. ‘If you believe that true activism occurs when groups are completely independent of government and largely involves rallies and street protests, we are certainly failing on that score. I prefer the robustness of government-funded HIV organisations that have built up respect from governments and are able to push boundaries with them about the necessity to get effective messages across to affected communities.’ The history of HIV activism in Australia is a remarkable one. It is a story of a marginalised group of people working closely with the federal government to achieve better outcomes for themselves and others affected by HIV. Activism has ebbed and flowed. The initial years of the HIV epidemic saw a mass voluntary effort that deserves to be remembered. In 1988, the formation of the National People Living with AIDS Coalition (as NAPWHA was then known) gave HIV positive people a forum in which to make their concerns and voices heard. By the 1990s, these voices were steering activism in a powerful and innovative direction. ACT UP offered a way in which to express their concerns and to lobby. More recently, advances in treatment options for people living with HIV and the internet have shifted the scope of activism. But it is clear Australia’s world-leading response has been driven by extraordinary individuals living through incredibly challenging times. n Dr Shirleene Robinson is a Vice Chancellor's Innovation Fellow in Modern history at Macquarie University. her current research focuses on hIV and volunteerism in australian history. she wishes to thank Ross duffin, lloyd Grosse, Geoffrey harrison and david Menadue for their generosity in sharing their experiences with her in 2012 and 2013.
Photos CloCKWIse toP leFt toM WoRsNoP, PosItIVe lIFe NsW, aUstRalIaN lesBIaN aNd Gay aRChIVes, lIVING PosItIVe VICtoRIa
10 April 1990, more than 80 people met to form a Sydney ACT UP chapter. A number of people involved with this first meeting had attended an emergency drug meeting that had been called by People Living With AIDS (PLWA) NSW to discuss a lack of treatment and to urge the formation of ACT UP. Members of other marginalised groups, including sex workers, were also part of this activism. The first Sydney ACT UP protest involved more than 50 members who demonstrated at the federal health department, targeting the Australian Drug Evaluation Committee, which was
DOCTOR LOUISE ANSWERS YOUR QUESTIONS
what’syourproblem? Photo IG PhotoGRaPhy
Should I have a hep B vaccine? Sally from Perth writes: I have HIV and have been told I should have a hepatitis B vaccine. I get confused. Which one is that and how do you get it? Dr Louise replies: Hepatitis B is a virus that causes inflammation of the liver and can lead to liver disease and liver cancer. It is transmitted by blood-to-blood contact including injecting drug use, unsterile tattooing or body piercing, sharing toothbrushes and razors, sexual exposure and from mother to child during delivery and early infancy. Hepatitis B can be diagnosed by a blood test, which differentiates between acute infection, chronic infection, past infection or previous vaccination. Hepatitis B is preventable by a course of three vaccinations. These
are available free to all children in Australia. Adults in risk groups are encouraged to seek out vaccination. Risk groups include health care workers, travellers, sex workers, gay and other MSM, HIV positive people, and people from high-prevalence countries. Vaccination for HIV positive people is free in some states and provided at a reduced cost in other areas. Ask your doctor about this. Acute hepatitis B infection can be serious and symptoms can include malaise, vomiting, nausea, fevers, jaundice,
abdominal pain and occasionally serious liver inflammation and sometimes liver failure. In adults it may be a short-lived illness, which can be serious but in many adults it spontaneously resolves. Those people then have lifelong immunity to hepatitis B and this can be determined by a blood test. The infection rarely spontaneously clears in children and many go on to have chronic hepatitis B. And one in ten adults who are infected by the virus may go on to have chronic hepatitis B. Often these people have no
symptoms and may not be aware they have the virus. However, they can pass the infection on. The definition of chronic hepatitis B is when there is evidence in blood tests that the virus has persisted. These people have positive hepatitis B surface antigen present and should also be tested for other infections such as hepatitis A, C and HIV and have their liver function assessed and a clinical assessment. People with chronic hepatitis B should be monitored regularly and may benefit from treatment. In general, coinfection with hepatitis B and HIV adds to the complexity of each infection. Regular review and monitoring of the stage of hepatitis B and looking out for potential complications is required. Some patients will be referred to a specialist for their hepatitis B care. Sometimes the active antiretroviral HIV medication also has a good effect on the hepatitis B virus and so this is a
consideration when choosing the antiretroviral medication regime. The take-home message is check that you’ve been tested for hepatitis B, and if you are not immune, book in for the vaccinations and make sure you have all three. If you have chronic hepatitis B, talk to your doctor about ongoing monitoring and inform your partners and ensure they have been vaccinated. Keep your questions under 100 words and email them to firstname.lastname@example.org. n this 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. dr louise owen has been working as a sexual health Physician in hIV sector since 1993. Previously a director of VaC’s Centre Clinic in Melbourne, she is currently the director of the state-wide sexual health service in tasmania.
SUPERfoods This is the International Year of Quinoa, so we asked Miriam Chin to suggest a simple and tasty recipe using this versatile grain.
4 add the spinach and mix it in with the quinoa until it wilts, cook for 2 minutes then stir in the parmesan cheese and the pumpkin. take off the heat and leave to stand for about 5-10 minutes until the quinoa is soft and creamy.
Pumpkin and spinach risotto Photo By
Quinoa (pronounced ‘keen-wah’) is a good source of dietary fibre, folate and magnesium. It is high in protein, compared to other grains, and has a low glycemic index, meaning it will keep you fuller for longer and can help with controlling blood glucose levels. Unlike many other plant proteins, quinoa is a complete protein, containing all the essential amino acids our body needs. Quinoa makes a glutenfree alternative to couscous and can be used instead of oats in porridge. try using quinoa instead of rice in soups, casseroles or, as here, in risotto.
sue stubbs stylING Phillip McGrath
Recipe from Everyday Quinoa published by New holland Publishers, released september 2013. $29.95
l 900g butternut pumpkin,
peeled and cubed 2 tablespoons olive oil 1 large onion, finely chopped 3 cloves garlic, finely grated ¼ teaspoon ground nutmeg 2 cups quinoa, rinsed and drained l 4¼ cups hot vegetable stock (preferably low-sodium) l salt l pepper, freshly cracked l 200g fresh baby spinach leaves l ½ cup grated parmesan cheese l l l l l
1 Pre-heat the oven to 200°C and line a baking tray with non-stick paper. Place the pumpkin on the tray, lightly coat with a little olive oil and season with salt and pepper. Bake for 20-30 minutes until the pumpkin is tender and a little charred.
2 heat oil in a large saucepan; add the onion and sauté until soft. stir in the garlic and nutmeg and cook for about 30 seconds. PositiveLiving l 10 l sPRING 2013
add the quinoa with the stock and season with salt and pepper to taste. (Keep in mind that some parmesan cheese and storebought stock can also be quite salty.)
3 stir well, bring to the boil, reduce the heat, cover and simmer for about 15-20 minutes until all the stock is almost absorbed. If you think of it, and only if you think of it, give the pot a stir once or twice.
For more on quinoa, visit fao.org/ quinoa-2013/en/ n Miriam Chin is a dietitian at the albion Centre in sydney. dietitians are university-qualified health professionals trained to assess nutritional needs and help people to manage their health by providing individualised eating plans, nutrition counselling and support. to see a dietitian specialising in hIV, speak to your hIV care provider.
stateOFMind THE COLUMN WHERE THERAPISTS RECOMMEND TECHNIQUES WE CAN EMPLOY TO DEAL WITH THE SYMPTOMS OF ANXIETY OR DEPRESSION
Morgan Webert describes the many ways we can benefit from
The healing touch me he often feels nauseous so I showed him an acupressure point on the wrist known to reduce nausea. As he pressed it, the sensation began to subside. James now visits me monthly as part of his self-care plan. He’s also learned a few acupressure exercises he can do himself.
CHOOSING THE RIGHT MASSAGE n For a gentle touch, deep relaxation, increased circulation and improved lymphatic flow choose swedish, lymphatic drainage, hawaiian lomi lomi or relaxation massage. Photo sKyNesheR
When James entered the room, I could tell immediately he felt uncomfortable. His arms were crossed defensively across his chest, he didn’t make eye contact and when he spoke his voice was low and hesitant. To put him at his ease, I sat him down with a glass of water before giving him the intake form. Already, I saw his shoulders relax and the nervous tension in his face soften a little. As I read his completed form and conducted the usual verbal intake about health and physical wellness, I understood why James seemed especially stressed and reluctant: this was his first massage. He told me he suffered from regular headaches and neck pain and that a friend had suggested he try a massage to help him relax. He also asked if he could keep his shirt on during the massage. While remedial massage is typically done with the client undressed but covered with a sheet or towel, exposing only one area at a time to work directly on the tissue, many effective techniques work through a sheet or clothing. So I told James he could keep his clothes on and that he would still benefit. James kicked off his shoes and socks and lay face up on the massage table. I began massaging his feet, working reflexology points that correlate to other parts of the body and promote relaxation. He closed his eyes and his breath began to slow. ‘I feel like I haven’t been touched in ages,’ he sighed. Remedial massage often focuses on manipulation of soft tissue (muscles, ligaments and tendons) to release physical tension. But any kind of healing touch has a profound impact on our nervous system and, as a
TO HELP RELIEVE ANXIETY FIND THE ACUPRESSURE TWO EASY ACUPRESSURE POINT: In the middle of the sternum you’ll find a point EXERCISES called the ‘sea of tranquillity’. YOU CAN DO It’s in the centre of the breastbone, three thumb widths up from the base of the bone. APPLY PRESSURE: Place your middle and ring finger on this point and apply gentle circular pressure while taking deep breaths into the sternum for one to five minutes. result, a positive effect on our whole body. Studies show that a caring touch turns on the parasympathetic nervous system (the rest and relax state), which stimulates our immune and digestive systems as well as lowers cortisol levels (the stress hormone), reducing anxiety and depression. I noticed James’ ankles were slightly swollen, so I applied gentle, broad effleurage strokes up his lower legs to promote better
n to work more strongly into the muscle layers and release deeply held tension patterns choose a remedial, deep tissue, myofascial or trigger-point massage.
TO HELP RELIEVE NAUSEA FIND THE ACUPRESSURE POINT: Measure three finger widths down from the wrist crease. Place the thumb in the groove between the two tendons on the inside of the wrist. this point is called P6 or ‘Inner Gate’.
n Prefer to keep your clothes on but still want the benefits of a massage? Choose sports or thai massage where the therapist works through loose comfortable clothes. however, these are both quite strong modalities.
APPLY PRESSURE: Use your thumb and middle finger to press firmly on the point from both sides of the wrist. hold this pressure and you may feel relief in as little as 10 seconds or you may need to hold it for up to five minutes. another option is to tap the wrists together at the P6 point.
n Go for a foot reflexology session where the therapist works with points on your feet that correlate to organs and the Chinese medicine meridian lines running through your body.
circulation and reduce the swelling. James then shared how he often feels cramping in his legs. These broad, flowing strokes improve circulation and bring fresh blood and nutrients to muscle tissue, helping reduce spasms, cramping and even atrophy that can result from immobilisation. It also speeds up the removal of toxins from the tissues and into the lymphatic system. In this way, massage also
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stimulates the lymphatic system, a crucial part of our immune function. With James now much more relaxed, I worked into his shoulders with simple arm stretches aimed at opening the chest and improving posture, followed by trigger-point massage in the neck to release chronic muscular tension. At the end of the massage, James said he felt better than he had in a long time but when he sat up his face went pale. He told
n to avoid direct pressure on open lesions, inflamed areas or bacterial diseases that can be spread through the circulatory system, choose point-specific massage such as acupressure or trigger point, or energy work such as Reiki, that can have an impact on the whole body without aggravating the infected or inflamed area. n Morgan Webert specialises in remedial massage therapy from her clinic in sydney.
NEW ACON HIV/STI SCREENING SERVICE
Poz guys welcome a [TEST] and STIs can be a bit of a chore. For most it has meant finding a place to test, making the appointment, waiting – sometimes for what seems like forever – to actually have the test done, worrying that we might be judged. And then having to make a follow-up appointment in a week’s time to get the results. But despite these obstacles, research tells us the vast majority of gay guys (over 60%) still test regularly. However, if we’re going to end the HIV epidemic in NSW, more gay guys need to test more often, because knowing your HIV status enables you to improve your health by getting on to treatment ASAP and to reduce the risk of passing on the virus. And rapid testing, which has been trialled in various locations throughout NSW over the last 18 months, allows for exactly that by making it much easier and quicker to get test results. The big news is that now ACON has its very own rapid HIV and STI testing service called a[TEST]. a[TEST] is an ‘express service’; the entire appointment will take about 30 minutes, including the time it takes to get the test result. The main difference between a[TEST] and other services is that trained gay educators administer the test as well as provide the results. There’s also a registered nurse onsite from Sydney Sexual Health Centre, as well as access to support services if needed. We’ve created a welcoming space where you can have a free and confidential rapid HIV test as well as a full STI screen, which involves giving a urine sample, throat swab, anal swab and having a blood test. For positive guys we offer STI screening and Hep C testing if requested. n The service operates out of our Sydney office at 414 Elizabeth Street, Surry Hills and runs every Wednesday and Thursday from 4.30-7.30pm. Bookings are required but it’s easy to do on atest.org.au or by calling us on (02) 9206 2000. Lance Schema, Associate Director, HIV and Sexual Health, ACON GETTING TESTED FOR HIV
Canyoulendmesomemoney? ‘I still haven’t been paid, and I’ve almost run out of my meds.’ BRETT HATED ASKING FRIENDS FOR MONEY,
but it seemed to be happening more and more lately. He had a full-time job, but his boss often asked him to wait for his wages. There was always a reason – a customer was late in paying, a cheque hadn’t cleared – but Brett always got paid eventually, although the random paydays were making it really hard for him to budget. It was more than just annoying. Brett was worried his cash flow problems would affect his health. He knew maintaining adherence to his medications was essential, but it was hard to keep up his supplies when he never knew how much money he was going to have. Brett rang the HIV/AIDS Legal Centre (HALC) to see if there was any way he could keep his job, but make his boss pay him on time. He spoke to a volunteer who arranged for him to come in for a meeting. At the meeting, he met Melissa, a solicitor, who explained that he
was experiencing indirect discrimination on the grounds of disability. ‘But I’m not disabled,’ Brett protested. ‘I’m fine. I go to work every day.’ ‘Being HIV positive is classed as having a disability for the purposes of protection under the anti-discrimination laws,’ Melissa said. ‘You don’t have to be suffering any HIV-related illness to qualify, just being positive is enough.’ Melissa explained that Brett’s boss was indirectly discriminating against him by making him wait for his wages. Having irregular paydays was more of a burden on him, as an HIV positive person, than it was on a person without a chronic medical condition, because he needed to be able to buy his medication at regular intervals. The irregular paydays were not an intrinsic requirement of the job – people who worked in Brett’s trade for other employers got paid regularly – so requiring
Brett to put up with them was discriminatory. ‘How can my boss be discriminating against me because of my HIV when he doesn’t even know I’m HIV positive?’ Brett asked. ‘That doesn’t matter, it’s enough that these actions are having more of an impact on you because of your disability. And your boss doesn’t have to find out you’re positive because of this, either. We have another name for our centre we use in cases like this. As far as your boss is concerned, we’re just an ordinary neighbourhood legal centre.’ Melissa lodged a complaint with the Anti-Discrimination Board. She attended a conciliation meeting with Brett’s boss, who agreed to ensure that wages would be paid on time. n HALC offers free legal advice and representation to HIV positive people in NSW. If you have a legal problem, call 9206 2060 or freecall (for regional areas) 1800 063 060 or visit halc.org.au.
Stressed out about finances? SEVERE FINANCIAL WORRIES are one of the leading causes of stress and can lead to numerous health problems such as anxiety and depression; digestive problems; dental problems; drinking, drug use, and overeating; skin problems; shortness of breath; joint pain; decreased libido; hair loss; and a greater risk of cancer, heart disease, and stroke. The stress hormone corticosteroid suppresses the effectiveness of the immune system. If you are HIV positive, the impact is even greater as the immune system is already compromised. Whether you are employed or not, juggling your bills and credit cards is often a worry, and somewhere in the back of your mind lurks the niggling fear of not being able to cope. This only fuels that fear and creates anxiety. Do you dread opening mail because it might be another bill?
Are you always late in paying them? Do you use credit cards for basics such as food and groceries? Most people avoid thinking about their finances and hope the bills and nasty reminders will just go away. Unfortunately they don’t and if ignored for too long they just get worse. You try hard to do it right but despite the best intentions, you find yourself in debt – whether it’s a sudden drop in income because of having to drop work hours due to fatigue and doctor’s appointments, or going over the mobile cap when a friend is in need – it happens. So, what to do? Lie awake all night worrying? Not good, worry just compounds the problem, especially when some of those debilitating health problems kick in. If only there was a little chillpill to drop and then, hey presto, no more money worries. Unfortunately there isn’t one,
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but the next best thing can be chatting with a financial counsellor. Sound boring? Maybe not! As in any field of expertise, picking the brains of a trained professional can open up ways and means unknown to you, find workable solutions and allay your fears. Whether you have fines to pay, rent arrears, tax debts, big power and telco bills, vet bills, Centrelink repayments, mortgage woes, car troubles or you haven’t lodged a tax return for years, talking it through and unloading onto a financial counselor does help. Solving your money worries does affect your wellbeing, as evidenced by a client whose CD4 count was down to 210 because of all the stress and once resolved, shot up to 580. n The Bobby Goldsmith Foundation offers a free confidential financial counselling service to all HIV positive people living in NSW. Call 9283 8666, option#2.
from the president JANE COSTELLO Welcome to our first Talkabout News in Positive Living – a new way for us to engage with people living with HIV in NSW. Over the last few months the Board and staff at Positive Life have been working on our new strategic plan. A planning day brought us together to identify opportunities, explore goals and develop a vision for our future; and we came away from the day with a huge sense of achievement. This is the time for our organisation to grow in response to the changing environment and the diverse community we represent and serve. And by aligning with the NSW HIV Strategy 2012-2015, our new Strategic Plan aims to do just that. It will be launched in the coming weeks. Protecting human rights and the right to privacy has, from the beginning of the HIV epidemic, been recognised as essential to an effective public health response. In light of this, and in partnership with the HIV/AIDS Legal Centre (HALC), we have produced a new resource entitled Disclosing your HIV Status: a guide to some of the legal issues. The booklet is about protecting and empowering positive people who disclose their HIV status and their right to privacy in NSW. PLHIV organisations achieve a lot in Australia. We lobby governments and change policy, improve access to treatment and services, educate, support and generally try to improve the health and lives of people living with HIV. We’re proud of what we undertake collectively on behalf of the body positive. This is why we’ve joined NAPWHA and its other member organisations to stamp our work: ‘Poz Action’.
414 Elizabeth Street Surry Hills 2010 ) (02) 9206 2177 or 1800 245 677 ø positivelife.org.au
PLHIV as advocates for better treatments the Academy Award nominated documentary How to Survive a Plague and was reminded how, almost 30 years ago, people living with HIV (PLHIV) were advocating better HIV treatments. Their actions led to an overhaul in how new HIV drugs were tested and made available. Today they are still active and influential campaigners. Living Positive Victoria continues this legacy by highlighting both the personal benefits of current HIV treatments and the ambitious and innovative community-led strategies that could play a central role in helping end the HIV epidemic in Australia. Such a bold vision was laid out in the 2011 Melbourne Declaration, where community groups, along with researchers and clinicians, called for HIV treatments to be made available to all those who could benefit. We are supporting an informed community conversation, which recognises that the views and decisions of PLHIV are central. At the heart of this is a rock-solid commitment to the human rights of PLHIV, especially the right to accessible and relevant information.
LIVING POSITIVE VICTORIA
RECENTLY I WAS WATCHING
HIV TREATMENTS TODAY A new era in HIV treatment was heralded by the demonstration in the mid-1990s that antiretroviral drug treatments, in combination, were highly effective in dramatically reducing serious HIVrelated illness and deaths. Taking multiple different pills regularly and on time could be challenging. Some regimes had distressing and even lifethreatening side effects. Despite this, the personal health benefits of combination treatments was transformative. These new combination treatments are simpler to take and have far fewer side effects. For those PLHIV currently on antiretrovirals, over 95% find these medications are able to suppress the virus to very low levels in the blood. This has been a huge success story. When the virus is suppressed in this way life expectancy for PLHIV appears to be much closer to that of a similar person not living with the virus. A further benefit is that PLHIV can have increased confidence and reduced anxiety as they are much less likely to pass the virus on to others. Ian Muchamore
Starting treatment is personal ian muchamore
2007, five years after my HIV diagnosis, I made a decision with my GP to commence treatment. As a trained health researcher, I had wanted to grasp what the current scientific evidence supported and what my options were. My CD4 count was consistently falling and I was approaching the point at which most doctors would recommend treatment. Having a trusted relationship with my very patient doctor and the support of friends and partner was vital. I don’t assume everyone considers such decisions in the same way, but my point is that beginning HIV treatment is a personal decision that requires a supportive environment. In recent months, I have had several conversations with positive friends who aren't ready to begin treatment. Their physical health status is not obviously affected by HIV. They have discussed options with their doctor and, as far as I can judge, do not appear to be fundamentally opposed to the possible health benefits of HIV treatment. I completely respect their personal decisions. At a future date and with the information and support that they require, they may
well make a different decision about treatment. One key observation from my unrepresentative sample is that simply being presented with more information about modern HIV treatments is only one part of what we need. Indeed, there is a broad body of knowledge on communicating health issues that has led us to recognise that pushing too hard for people to be ‘better informed’ can even sometimes be counter-productive. Living Positive Victoria has produced a concise fact sheet on early treatment (available at livingpositivevictoria.org.au) and has also led several community forums on the issue. GETTING TREATMENT There is a surprising level of uncertainty in what we know about who is currently taking HIV treatments. Nationwide it appears that only about half of all PLHIV who know their HIV status are on treatment. Recent Victorian figures indicate that, at the time of being diagnosed, almost 40% of PLHIV have a CD4 count of under 500. It is clear there are many PLHIV, especially those with lower CD4 counts and susceptible immune
systems, who could see personal health benefits from beginning HIV treatment. Understanding what personal and social barriers PLHIV face that restrict them from going on HIV treatments, deserves our attention. THE COMMUNITY DIVIDEND There is genuine enthusiasm amongst many scientists, shared by community-led HIV organisations, that increasing the number of people on HIV treatment could have a real impact on the number of future infections. The community dividend of increased access and uptake of treatment could be a turnaround in the HIV epidemic. Researchers have modelled future scenarios that would see the number of new HIV infections finally decrease. Such futures do appear dependent on a truly shared and community-wide response. The goals of having the number of PLHIV receiving treatment approaching 90%; many of the estimated 2000 Victorians currently living unknowingly with HIV getting tested; and current community rates of condom use remaining stable, are truly achievable.
The concept of ‘Treatment as Prevention’ likely adds an extra dimension to the personal decisions of PLHIV considering treatment. EMPOWERING PLHIV The views of PLHIV must remain central to treatment decisions. To be clear, no one is suggesting we should be pressured to commence or continue HIV treatment. A key part of empowering PLHIV to make decisions about treatment is in maximising health literacy – the ability to seek, understand and use health information and health services. Different PLHIV, with different backgrounds and in different circumstances, will have different health literacy needs when considering HIV treatment. A single approach will not fit all and we need to be especially aware of meeting the needs of those with low health literacy. Ian Muchamore is Vice-President of Living Positive Victoria, a previous Victorian President of the Australian Science Communicators and a public health researcher currently addressing the barriers to health literacy.
what’s on ¢ Behind
the Candelabra Fundraiser screening for Living Positive Victoria at The Astor Theatre, Sunday September 15, 4pm. ¢ For bookings, visit behindthecandelabra. eventbrite.com.au or call (03) 9863 8733 ¢ Be a part of the ENUF team competing in Spartan Race on Sunday October 6. ¢ For information visit enuf.org.au ¢ Living Positive Victoria’s Annual General Meeting will be held on Thursday October 10 from 6pm at Melbourne Multicultural Hub, 506 Elizabeth Street, Melbourne. ¢ RSVP to (03) 9863 8733 by October 1
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Living Positive Victoria is a community-based organisation working to advance the human rights and wellbeing of people living with HIV. Its mission is to educate, support and advocate for all Victorians living with HIV, as part of a society-wide response to end the HIV epidemic. Suite 1, 111 Coventry Street Southbank 3006 ) (03) 9863 8733 ø livingpositivevictoria.org.au