positiveliving FOR PEOPLE LIVING WITH AND AFFECTED BY HIV | SPRING 2017
FACT: A positive person on
treatment with an undetectable viral load cannot transmit HIV
Child ‘virtually cured’
The doctor will see TIPS FOR you now LIVING
Every year around Australia a significant number of people find out they are HIV-positive in clinics that are ill-equipped to deal with the diagnosis.
Australians living with HIV were invited to send in photos that best represented resilience against stigma. And the results are in.
SHOCKING A NATION ONE OF AUSTRALIA’S MOST ICONIC TV ADS WASN’T SELLING BEER OR CARS OR YEAST EXTRACT — IT WAS SELLING FEAR. positiveliving ISSN 1033-1788
EDITOr Christopher Kelly
David menadue Vicky Fisher CONTrIBuTOrS Jake Kendall, David menadue, Sharna Quigley, Claire Sidlow DESIGN Stevie Bee Design
ASSOCIATE EDITOr PrOOFrEADEr
COVEr ImAGE xx
South African nine-year-old who contracted HIV at birth now shows no signs of an active virus.
WITH HIV 16
IT’S ALL ABOUT
Cauliflower & grapefruit 16 IC M E D I P E E T O M A RE SMART BUG BECOMES SUPERBUG
Positive guys talk about what it means to be undetectable
HIV+THE BODY 10
Free subscriptions are available to HIV-positive people living in Australia who prefer to receive Positive Living by mail. To subscribe, visit napwha.org.au or call 1800 259 666. CONTRIBUTIONS Contributions are welcome. In some cases, payment may be available for material we use. Contact the Editor EmAIl: firstname.lastname@example.org ALL CORRESPONDENCE TO: Positive living PO Box 917 Newtown NSW 2042 TEl: (02) 8568 0300 FrEECAll: 1800 259 666 FAx: (02) 9565 4860 WEB: napwha.org.au Positive Living is published four times a year by the National Association of People With HIV Australia and is distributed with assistance from Gilead and ViiV Healthcare. Next edition: December 2017 SUBSCRIPTIONS
l 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. l 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. l The content of Positive Living is not intended as a substitute for professional advice.
positiveliving l 2 l SPrING 2017
thenews fromC H Rthe editor I STO P H E R K E L LY
It’s a fact. And it matters.
In this so-called post-truth world, we’re told that facts don’t matter anymore. Expert opinions don’t count. Well, I’m having none of it. People with HIV on treatment with an undetectable viral load cannot pass the virus on to their sexual partners. There. That’s a big, fat fact — with bells on. The Australian-led study — Opposites Attract — recently reconfirmed the science behind treatment as prevention (TasP) by recording zero transmissions of HIV from 17,000 acts of condomless sex between poz-neg gay couples. Of course, for most of our readers none of this is news. As far back as the Swiss Statement in 2008 there has been evidence that positive people with undetectable viral loads were less likely to transmit the virus. Then, in 2014, the PArTNEr study reported near-zero risk of transmission between sexual partners of mixed HIV status. At first — barely daring to believe it was true — the positive community reported the evidence with caveats and caution. No more. Here’s what one of the world’s leading HIV experts — Dr Anthony Fauci — has to say about TasP: “. . . the overwhelming evidence allows [scientists] to be confident that what we are saying is fact”. What needs to happen now is for the facts to seep into the consciousness of the wider population. undetectable equals untransmittable. Only then will people realise there is nothing to fear from someone with HIV. Once the fear is gone, the stigma will dissipate. It’s time to spread the word — or letters: u=u.
PrEP decision on hold A decision to subsidise PrEP has been deferred, much to the disappointment of HIV advocates. “Given PrEP is so effective at preventing HIV transmission, people will be disappointed and deeply frustrated at this outcome,” said Darryl O’Donnell, CEO of the Australian Federation of AIDS Organisations (AFAO). Drug companies Mylan and Gilead Sciences both brought applications for PrEP before the Pharmaceutical Benefits Advisory Committee (PBAC), which has decided to hold off on a decision while it seeks information on the number of people likely to use PrEP and conducts further price negotiations. Approximately 31,000 Australian gay and bisexual men are at high risk of HIV and would
Without access to PrEP, Australia will not achieve its target of ending HIV transmission by 2020. benefit from PrEP’s listing on the Pharmaceutical Benefits Scheme (PBS). AFAO, along with other HIV organisations, recommends that the two drug companies and PBAC fast-track negotiations as a matter of urgency. “HIV will be needlessly transmitted while we wait for equitable and affordable
access to PrEP,” said O’Donnell. National Association of People with HIV Australia vice-president Robert Mitchell also strongly endorses urgent discussions to ensure PrEP is listed on the PBS as soon as possible. “PrEP keeps people at high risk of HIV safe and gives people control and confidence,”
he said. “This helps everyone take responsibility for HIV prevention.” Extremely effective at protecting against HIV, PrEP — pre-exposure prophylaxis — has shown to be a valuable tool in the effort to end new transmissions. Indeed, the UK PROUD study has shown that for every 13 people on PrEP, one HIV transmission is avoided. “Australia’s HIV rate has stubbornly plateaued at around 1,100 new infections per year for the past five years,” said O’Donnell. “With PrEP at the centre of a revived response, we would make serious inroads in ending HIV transmission. Without access to PrEP, Australia will not achieve its target of ending HIV transmission by 2020.”
Blueprint to end HIV A plan developed by the Australian Federation of AIDS Organisations (AFAO) sets out how — with extra government investment — Australia can become the first country in the world to end HIV transmission. Supported by community groups and research institutes, the HIV Blueprint was presented to federal MPs at Parliament House in Canberra. It calls for extra government funding of $32.5 million. Among other initiatives, the cash would be used for educational programs, identifying “hidden populations at risk”, and
an “inflection point” in the fight against HIV. “The capacity to end HIV transmission is within reach,” he said. “Just as we led the world in containing HIV in the 1980s, we can now lead the world in ending Darryl O’Donnell at Parliament House transmission.” with Senators Lisa Singh and Dean Smith The Blueprint promises — co-chairs of the Parliamentary Liaison to prevent more than Group for HIV 2,000 HIV transmissions for the promotion of PrEP and within three years. Australia can rapid, regular testing. achieve this through a “powerful According to AFAO CEO Darryl combination of new science and O’Donnell, Australia has reached decades of experience”, and by
championing “models of HIV diagnosis and linkage to highquality prevention, treatment and care”. However, O’Donnell acknowledges that reaching the goals laid out in the Blueprint will take “great effort”. “We won’t get there through business as usual,” he said. “Most of all, it means we must provide greater support for communities working to end HIV transmission . . . HIV community organisations have the expertise and motivation to provide governments with a powerful ally in ending an epidemic.”
Record low rates of HIV in NSW NSW is experiencing one of the most rapid decreases in new HIV notifications among gay and bisexual men in the world. New data records 101 positive diagnoses among men who have sex with men in the first six months of this year — the lowest number since HIV emerged in the 1980s. That figure equates to a 39 percent drop compared with the same period over the past six years. Describing the fall as “great news”, NSW Chief Health Officer Dr Kerry
Chant said: “The data demonstrates our continuing leadership in HIV prevention.” The dramatic decline in new infections reflects attempts to encourage more testing, improve treatment rates and provide access to PrEP. ACON CEO Nicolas Parkhill praised all those involved in the response, particularly affected communities: “This is a remarkable collective effort and the momentum must be maintained.”
positiveliving l 3 l SPrING 2017
Teamwork: a collective effort responsible for rapid fall mOrE NEWS AT PL ONLINE
thenews unifying voices of poz women
The Grim Reaper returns
Women living with HIV representing community organisations from around Australia met at a symposium in Sydney to determine what policies could be adopted by the 8th National HIV Strategy. Among the policy proposals signed off on were: better describing the unique and different risks of women with HIV; reviewing and updating the guidelines on the delivery of sexual health services, including antenatal screening, breastfeeding, and assisted reproductive technologies; and strengthening the health literacy of positive women. “The symposium was a powerful demonstration of national collaboration at its best. We worked hard to develop a position paper that all those in attendance were in support of,” said Kath Leane, Chair of the National Network of Women Living with HIV. “We believe our recommendations will improve the lives of women with HIV by ensuring an increased focus on what matters to positive women in Australia.”
It’s one of Australia’s most iconic and controversial TV ads — and now it’s back, sort of. Entrepreneur Dick Smith has launched a television campaign that echoes the Grim Reaper ad of the 1980s. But instead of warning of the spectre of AIDS, Smith’s campaign alerts the nation to the perils of immigration growth. Using bleak imagery, calamitous music and the same voice-over artist as the Grim Reaper ad, Smith’s self-funded TV spot is likely to bring back painful memories to some in the positive community. “It's remarkably insensitive to revive the awful memories that people with HIV and their friends and families have of that extremely sad period in the late eighties when so many of our loved ones were sick and dying from AIDS-
Dick Smith has based his new ad campaign on immigration on the infamous 1980s Grim Reaper AIDS TV commercial and even hired John Stanton, who voiced the Grim Reaper campaign to voice it.
related illnesses,” said longterm survivor David Menadue. When the Grim Reaper ad first appeared on Aussie screens 30 years ago, people with HIV were treated with fear and discrimination. “There has been
a lasting stigma about being HIV-positive ever since this period and it is the image of the Grim Reaper that often comes into people's mind when they think of HIV/AIDS,” said Menadue. “The revival of this
highly stigmatising image has the potential to allow negative feelings towards people with HIV to resurface.” Such an outcome would be unfortunate, especially at a time when the positive community is endeavouring to educate the wider community about the benefits of treatment as prevention. By evoking the Grim Reaper ad, Smith’s antiimmigration ad “would rightly make some positive people feel anxious”, said Aaron Cogle, Executive Director of the National Association of People with HIV. “At a time when community organisations are making great efforts to reduce HIV stigma, NAPWHA believes this is not the right direction to be heading in.” l more on The Grim reaper on page 11
Crackdown on rates hit all-time high gays fuels epidemic Indonesia’s hardline stance against the LGBT community is hampering efforts to contain HIV, say activists. Since the government clampdown early last year, outreach and awareness initiatives have been shelved and clinics
Anti-LGBT activists protest in Yogyakarta, Indonesia closed. In that time, government officials have increasingly made homophobic pronouncements, raided mOrE NEWS AT PL ONLINE
gay establishments, banned dating apps and arrested hundreds of people. And in May this year, a young gay couple was targeted by vigilantes and publicly caned for having sex. "This is fuelled not just by bigotry and misunderstanding but by public officials,” said Kyle Knight, a researcher for Human Rights Watch. “I think that's the really scary thing as we go forward. It's fair game to go after LGBT people in Indonesia." Unless official attitudes are eased, activists say they will struggle to manage Indonesia’s HIV epidemic — an epidemic that has already infected up to a third of young gay men in Jakarta. “People are scared,” said Fajar Prabowo, program officer at a Jakarta sexual health clinic. “It’s very hard to get people to come to the clinic. Now it’s even harder to reach them.”
A record number of HIV diagnoses have raised alarm bells in New Zealand. Last year, 244 people were diagnosed HIVpositive — the highest number to date, bringing the total number to 3,500 by the end of 2016. The core group — 80 percent — are gay or bisexual men; the other 20 percent are heterosexuals. “The reality is no-one is immune from risk,” said Jason Myers, Executive Director of the New Zealand AIDS Foundation (NZAF). “The message is clear: if you think you have been at risk, then get tested for HIV.” NZAF cites on-going condom promotion, PrEP availability, increased testing and immediate treatment access as key methods in curbing new transmissions. “The world of HIV prevention has been revolutionised in recent years,” said Myers, “and the time to act is now if we are to gain the maximum benefit possible from new opportunities.” Mark Fisher of Body Positive New Zealand
positiveliving l 4 l SPrING 2017
agrees that the route to ending HIV is through testing and treating. “We are working to engage people in testing and adhering to treatment to maintain an undetectable viral load,” he said. “With
A billboard ad encourages gay and bisexual Kiwi guys to test for HIV most of the transmission amongst men who have sex with men happening in New Zealand, if we can reduce the transmissibility ratio by eliminating the community viral load we can ensure people live healthier lives and can’t pass HIV on.”
Aust. study strengthens U=U As the recent IAS Conference on HIV Science has shown, extraordinary progress continues to be made against HIV. And, as Rebecca Benson reports, findings of an Aussie-led study took centre stage. It was arguably the scenestealing news of the threeday conference: results from a ground-breaking Australian-led study unequivocally validated that people with HIV on treatment with an undetectable viral load cannot pass the virus on to their sexual partners. In short: undetectable equals untransmittable. Even shorter: U=U. In the Opposites Attract study, 358 couples reported almost 17,000 acts of condomless anal sex with zero HIV transmission. “Our research means that we can say, with confidence, that effectively treated HIV blocks transmission in couples of differing status,” said chief investigator Professor Andrew Grulich. “This is a massive relief for these couples and means undetectable viral load is up
founder, Bruce Richman, said: “This is transmissionstopping information.” Dr Anthony Fauci, one of the world’s leading immunologists and head of the US National Institute of Allergy and Infectious Diseases, said the findings put scientists in a remarkable position. “We never like to use the word ‘never’ of a possible risk. So it’s an unusual situation when the overwhelming evidence U=U advocates take allows us to be confident that to the stage in Paris what we are saying is fact.” In response to the news, there with UNAIDS released a document stating: condom use in “This knowledge can be empowering for eliminating people with HIV. The awareness that they HIV are no longer transmitting HIV sexually transmission.” can provide people living with HIV with a Described stronger sense of being agents of as “lifeprevention in their approach to new or changing”, the news was seized upon by existing relationships.” It’s also hoped that advocates. “The evidence from Opposites the U=U message will help break down Attract adds further strength to the U=U discrimination against people with HIV. tagline of the Prevention Access “There should be no reason to fear a Campaign,” said Gus Cairns of aidsmap. person with HIV,” said Professor Grulich, The campaign — set up to promote the “and there should be no reason why there U=U message — has garnered worldwide should be any stigma against a person with support. Of the Australian findings, its HIV.”
Cure turns to cancer drugs The search for a cure for HIV has led researchers to turn their attention to new cancer treatments. In recent years, outstanding progress has been made in boosting the immune system against cancer, with some patients recording complete remission. The hope is that the same drugs can be used to clear HIV. Much like HIV, cancer evolves to survive attacks by the immune system. Cancer cells can produce proteins on their surface, which disable any assault. However, a new class of immunotherapy drugs — Sharon Lewin checkpoint inhibitors — keep the immune system fighting. So far, the results have been promising. In one trial, a fifth of people with terminal melanoma cleared the disease after receiving the new drugs. “That raises the question whether we could develop a strategy for HIV cure similar to the novel treatment in the field of cancer,” said Nobel Prize-winner and co-discoverer of HIV, Françoise BarréSinoussi. Speaking at the HIV Cure & Cancer Forum, Professor Sharon Lewin, of the Doherty Institute in Melbourne, agreed that the similarities between HIV and cancer could prove fruitful: “There are a lot of parallels . . . I think it’s huge.”
Child ‘virtually cured’ The next revolution Other news from the IAS conference that made world headlines was that of a South African nine-year-old who had contracted HIV at birth but who was now showing no signs of an active virus. After being given a burst of treatment shortly after being born, the child has remained HIV-free for eight-and-a-half years. The case boosted hopes among researchers of finding a functional cure for HIV. “It captures the imagination,” said Professor Diana Gibb of University College London. “It is exciting to see cases like this.” There have only been two previous examples of long-term HIV remission in a child following early, limited treatment of
bite-size takeaways l Some success has been made. AIDS-related deaths have almost halved since 2005.
antiretroviral drugs. The first — dubbed the Mississippi baby — remained viral free for 27 months; the second, a French child, now 20, stopped treatment at age six and has maintained virus suppression ever since. The South African child’s doctor, Avy Violari, doesn’t believe remission has been achieved by treatment alone. “We don’t really know why this child has achieved remission — we believe it’s either genetic or immune system-related,” she said. Replicating remission through new drugs or a vaccine would have the potential to help other people living with HIV. “By studying these cases, we hope we will understand how one can stop [treatment],” said Dr Violari.
l 90-90-90 is achievable. Seven countries — Botswana, Canada, Denmark, Iceland, Singapore, Sweden and the uK — have already hit the target, and many more are very close to it.
Injectables are poised to revolutionise HIV treatment. Early data presented at IAS shows that injections of HIV drugs every one or two months are as effective as a daily pill regimen. During a 96-week trial, participants were administered antiretroviral treatment orally via a daily pill, a monthly injection or a two-monthly injection. Results showed, of those on the single tablet, 84 percent suppressed the virus, compared to 87 percent with monthly injections, and 94 percent with two-monthly injections. Dr David Margolis, one of the researchers behind the ViiV Healthcare study, said: “Long-acting antiretroviral
l Early diagnosis is key. The earlier people are diagnosed and receiving treatment, the quicker they will reach an undetectable viral load.
injections may represent the next revolution in HIV therapy by providing an option that circumvents the burden of daily dosing.” ViiV Healthcare is repackaging two of its HIV medicines (cabotegravir and rilpivirine) into tiny nanoparticles that can be injected into muscle. This provides longlasting protection as the nanoparticles slowly release their contents into the body. Reviewing the research, Professor David Cooper from the Kirby Institute said: “The study marks yet another remarkable milestone in the evolution of HIV therapeutics.” A larger and longer-term study is already underway to try to confirm the results.
l BNabs, baby! Broadly neutralising antibodies (BNabs) are showing great potential to be powerful tools for HIV prevention and treatment in the future.
positiveliving l 5 l SPrING 2017
l Inching towards a vaccine. The so-called ‘mosaic vaccine’ — currently being clinically trialled on humans — has shown to be well-tolerated and capable of generating an anti-HIV immune response. mOrE NEWS AT PL ONLINE
A remote epidemic Two years ago, press headlines declared remote communities in northern Australia to be experiencing the “worst syphilis outbreak in 30 years”. It appears the situation is worsening. The outbreak — which originated along the Northern Territory/north-west Queensland border in 2011 — has since crossed into Central Australia and the Kimberley region of Western Australia. And now, according to a public health alert, South Australia is recording a “clustering of infectious syphilis cases among Indigenous persons in the Port Augusta region” with “potential for spread to other regions of SA”. Which begs the question: why is an easily curable disease — to quote one health expert — “pretty much out of control”? “It really is a failure of health systems in Aboriginal communities and Aboriginal healthcare generally that we have such an outbreak in 2017,” says Darren Russell, Clinical Associate Professor at the University of Melbourne. James Ward, Associate Professor at the South Australian Health and Medical Research Institute, agrees. “Outbreaks like this one are related to the inappropriately low level of investment in sexual health in remote areas,” he says. “They highlight the lack of highquality education, primary
healthcare and specialist outreach programs, all of which could stop these high rates of infection.” Australia is not alone in reporting syphilis outbreaks among its Indigenous populations. Globally, Native Americans, African Americans and First Nations people have all been affected. And, says Ward, they all share a common problem: “Lack of access to affordable, appropriate and culturally acceptable healthcare.” Syphilis rates among Australia’s Aboriginal and Torres Strait Islander populations have long been disproportionately high. Indeed, in 2015, rates of
Online ad campaign urges pregnant women to get tested syphilis were six times that of non-Indigenous people. “It’s a national shame,” says Ward. “There’s just a huge disparity between the two populations.” (The only other areas outside remote Australia affected by syphilis are urban gay communities in capital cities; among the general population,
syphilis remains rare.) Syphilis can be cured with a single injection of penicillin, but if left untreated it can have serious health impacts. Pregnant women, particularly, are a cause for concern with untreated syphilis leading to stillbirths, disabilities, and deaths. Since the epidemic began, at least four babies have died of congenital syphilis. "In a country like Australia, in this day and age, it’s almost unbelievable — it shouldn’t occur,” says Russell. Such catastrophic outcomes, says Ward, “highlight the urgent need for investment in sexual health services for young Aboriginal Australians living in remote regions.” Funding, of
course, is crucial — yet the problem goes deeper than that. The current approach, argues Patricia Fagan, Associate Professor at James Cook University in Queensland, is “ineffective and wasteful, being characterised by poorly or inappropriately resourced, uncoordinated, piecemeal and often ill-conceived interventions”. Success, Fagan believes, will ultimately hinge on wisely deployed resources and commitment — “The commitment of health systems, communities and families to safeguard their youth.” With the unacceptable level of other STIs well documented among Aboriginal youth, the capacity of syphilis to readily gain a foothold in so many remote locations comes as no surprise to Fagan. After all, remote Australian youth face specific disadvantages in relation to their sexual health as evidenced in lower levels of knowledge about STIs; significant levels of sexual risk behaviours; poor access to condoms; and inadequate access to skilled sexual health services. “In my view,” says Fagan, “good luck alone has to date prevented HIV/AIDS from becoming a significant issue in these settings. If the future only holds more of the same, the question must be: when will this luck run out?”
Smart bug becomes superbug A rise in treatment-resistant strains of gonorrhoea has prompted a call to action from the World Health Organisation. Describing the situation as “fairly grim”, health experts warn that the sexually transmitted infection is now much harder to treat as there are fewer antibiotics available. “Gonorrhoea is a very smart bug,” says Dr Teodora Wi from the WHO. “Every time you introduce a new class of antibiotics to treat gonorrhoea, the bug becomes resistant.” In some cases— recorded in Japan, France and Spain — the STI has
become completely impossible to manage. Dr Wi fears untreatable gonorrhoea could become more commonplace. “These cases may just be the tip of the iceberg,” she says. WHO is calling on countries to be alert for the further spread of resistant gonorrhoea and to invest in new drugs. Ultimately, though, WHO has said vaccines would be needed to effectively fight the STI. In that regard, there is promising
news: a vaccine developed to stop meningitis B has shown to crossprotect against gonorrhoea. The meningitis B jab was given to a million adolescents in New Zealand between 2004 and 2006. Data from sexual health clinics
has since found that gonorrhoea cases had fallen 31 percent among those vaccinated. Dr Helen PetousisHarris, a researcher from the University of Auckland, says: “This is the first time a vaccine has shown any protection against gonorrhoea.” Although the mechanism behind the immune response is, at the moment, unknown, the observational findings could inform future vaccine development.
positiveliving l 6 l SPrING 2017
l Gonorrhoea can occur in the throat, penis, anus or the vagina. It can sometimes, but not always, cause pain or discharge. Often, however, there are no symptoms at all. Condoms help reduce the risk of transmitting gonorrhoea during anal, vaginal or oral sex. Untreated gonorrhoea among women can lead to infertility, pelvic inflammatory disease and can be passed on to a child during pregnancy. Experts advise people who may be at risk to get checked for gonorrhoea — and other STIs — four times a year.
The doctor will see you now Every year around Australia a significant number of people find out they are HIV-positive in clinics that are ill-equipped to deal with the diagnosis. David Menadue reports. When Narelle visited her doctor in Melbourne's outer suburbs her constant tiredness and lethargy was put down to possible chronic fatigue syndrome. Fortunately, the doctor had the insight to order a range of tests, just to be sure — including one for HIV. The result proved positive. "It was the last thing I expected and even today I'm not totally sure of where I put myself at risk," says Narelle. Still reeling from the news, Narelle’s surprise diagnosis was compounded by what happened next. “The GP didn't have a clue where to refer me or what to tell me about my diagnosis — whether I would live or die, available treatments, nothing,” she says. The GP eventually referred Narelle to her local hospital, which then referred her on to the Alfred Hospital. Where — after several months of despair and anxiety — Narelle finally received the specialist care she needed. Narelle’s experience is being played out across the country, especially in rural and regional Australia. Patients are wandering into their local medical centres with no particular thought that they might be at risk of HIV and are learning the often distressing news of their positive status from a relatively inexperienced GP. Karen Blyth, from the Victorian HIV Consultancy Team at the Alfred, says they hear "horror stories" all the time. "We know there are people being diagnosed in less than favourable situations,” she says. “I was told of a pregnant HIV-positive
woman who was informed of her status as part of a pregnancy screening and the GP suggested she might have to terminate because of the risk of transmission to the baby.” Fortunately, the woman in question received more informed advice and — with treatment — was able to give birth to a healthy HIV-negative baby. With the launch of a new Victorian initiative called GP Connect, Blyth is hopeful such stories will soon become a thing of the past. GP Connect gives GPs outside of the HIV treatment sector the opportunity to link up with specialist nurses who can offer care and support to newly diagnosed patients. This includes explaining to the newly diagnosed the reality of
living with HIV in 2017. “Which,” says Blyth, “is a lot less scary, than say, the 1990s.” After all, these days — given the excellent treatments available — an HIV diagnosis doesn’t deter people from living a normal healthy life. Through GP Connect, newly diagnosed patients are also provided with contacts for HIV support organisations and other useful information. As well, the program provides education to GPs themselves, including HIV prescriber training. “GP Connect offers a visit to the GP practice by a nurse experienced in HIV medicine,” says Blyth. Similar programs to GP Connect operate across Australia. In New South Wales, for example, NSW Health runs the HIV Support Program (HSP), a
key component of which is the stipulation that all people diagnosed HIV-positive receive “appropriate clinical management”. With that in mind, the program offers a range of services for the newly diagnosed patient, including treatment management, psychosocial support, partner notification, and specialist community care. When it comes to early intervention, Queensland has adopted a novel approach that involves HIV-positive people providing immediate support to others when they are newly diagnosed. Employed by Queensland Positive People and located across the state, these sonamed ‘Peer Navigators’ are on hand to guide people through the
positiveliving l 7 l SPrING 2017
complex environment of HIV treatment and care. “For people newly diagnosed, trust is a major issue and trusting a doctor may be complicated and even a bit scary,” says QPP President Mark Counter. “However, trusting another positive person who has already been through the experience helps them through the journey.” Of course, a GP will need to be involved in a positive person’s HIV care at some point. It’s essential, then, to find one you’re comfortable with — and one who is comfortable with you. After all, the last thing you want is to feel judged or stigmatised. “It’s important to look for a doctor who fits you and who you get on well with,” says HIV advocate Ruan Uys. “It’ll take a couple of goes to find that doctor who really suits you. It can be hard to sift through that process, but once you find the one who works for you things get easier.” There are several steps you can take to find the right doctor. First off, ask another person with HIV or contact your local HIV organisation. They’ll be fully clued up to recommend a doctor to suit your needs. Don’t hesitate to consult with your prospective doctor beforehand. Ask plenty of questions to find out if you’re compatible. And, once you’ve made your choice, always try to be completely honest with them. After all, as HIV advocate Abby Landy says: “We spend so much time having to see the doctor; the reality is it’s an ongoing relationship, so I think having someone you can trust and build up a rapport with is important.”
IN A NATIONWIDE COMPETITION, AUSTRALIANS LIVING WITH HIV WERE INVITED TO SEND IN PHOTOGRAPHS THAT BEST REPRESENTED RESILIENCE AGAINST STIGMA. CLAIRE SIDLOW SPOKE WITH THE WINNING CONTESTANT ABOUT THE INSPIRATION BEHIND THE SHOT.
RESILIENCE s n e l a h th roug LOCKDOWN
Members of the Melbourne HIV community came together in June for the launch of the ENUF images ENUF voices Photographic Exhibition. The event showcased entries of a competition created to offer people living with HIV a visual platform to share their experiences of stigma. People from around the country were asked to submit photos that, to them, represented what stigma and/or resilience means, accompanied by a short narrative describing their experience of living with HIV. “I believe the creative process is an effective and valuable way to change thinking,” said ENuF campaign coordinator Brenton Geyer. “Those who entered their photos and stories gave others the opportunity to understand how stigma affects all those living with HIV.” The competition attracted a panel of judges who are strong supporters of the HIV community including laurina Fleure, rowena Allen, Professor Sharon lewin, Dr Alyson Campbell, Christabel millar and Daniel Burke. Burke is a photographer by trade and fully supports the aim of the ENUF program. “A picture can evoke emotion and this competition gives people the
REPRESENTS THE CLOSING AND
HARDENING OF MYSELF
AGAINST THE WORLD,
BUT FOR IT. MY
RESILIENCE TO FIGHT COMES FROM
TAKING STOCK OF
WHAT I HAVE, AND
HAVE ALWAYS HAD,
IT, AND PROTECTING
IT. WE ARE ALL IN
THIS TOGETHER AND ARE STRONGER FOR THIS; SMALL PARTS
Claire Sidlow: What compelled you to enter the competition? Jason Clarke: I originally heard about the contest through a couple of friends. I have actively kept a photograph diary via Instagram since my HIV diagnosis which has documented how I have felt. Through this process I have found images are better at expressing my story.
IN AN EVER-
CS: Tell us a bit about your HIV journey.
JC: my HIV journey started the first time I moved to melbourne. I got the news of my diagnosis on the first day on my new job and I then had to sort out the whole
positiveliving l 8 l SPrING 2017
chance to capture their experiences in a way that sometimes can’t be put into just words,” he said. The winning photo — submitted by Jason Clarke — is an evocative image of a lock and chain. Clarke initially chose to remain anonymous in his entry because he has never been publicly open about his positive status before. He’s now taking steps forward to share his journey with others.
SHUT UP AND LOVE ME
process of my diagnosis in a new city. I didn’t know much about HIV before my diagnosis and I only knew a handful of people who were openly HIV-positive. In the past, I hadn’t been the nicest to those who were open with their status. In hindsight, it was due to my own naivety and fear. It took me at least 12 months to really come to terms with my diagnosis and during that time I was not making the best choices in life, including quitting my job and struggling with crystal meth.
“FOR ME, THE BIGGEST HURDLE THAT HAVING HIV PRESENTS ME IS WHETHER I’LL
EVER FIND LOVE. I KIND OF HOLD BACK FROM EXPLORING RELATIONSHIPS
BECAUSE I FEAR REJECTION DUE TO MY HIV STATUS. ONE DAY I WANT TO BE ABLE TO JUST SAY TO SOMEONE:
“SHUT UP AND LOVE ME!” HIV DOESN’T DEFINE ME.
I’M JUST LIKE ANY OTHER BOY OUT THERE! I AM JASE AND AT 22 YEARS OLD I’M REALLY KEEN TO FIND THE LOVE OF MY LIFE AND LIVE A NORMAL, HAPPY,
CONTENTED LIFE KNOWING THAT MY HIV WON’T HOLD ME BACK.”—
CS: Have you experienced stigma due to your HIV diagnosis? JC: The stigma that I’ve experienced since my diagnosis has happened more often through social media and from my own personal view of HIV. I’ve since realised the impact of an acronym and words, and how HIV influenced my life and the choices I made. How people react to different illnesses was something I recently experienced when I was diagnosed with cancer. I found it very interesting how my friends, family and general public interacted with both illnesses, and that made me really understand the complexities of stigma — as both cancer and HIV have elements of misunderstanding. This realisation helped me recognise the power of words and how everyone has their own views and biases which can inform stigma. CS: What inspired you to capture the photo you did? JC: The inspiration stemmed from my time in a refuge I was staying at over Christmas. It was the first proper roof over my head for quite some time and it was one of four beds offered by the Bobby Goldsmith Foundation. I found it scary and not overly pleasant, but it was a roof over my head. The photograph of the lock was actually the lock on the outside gate, as the building had a very strong security element with strict curfews. The drops of water on the lock were due to the shitty weather of the day which, while not intentional, was good symbolism for how I felt during my time in the refuge.
WEAPONS IN COMBAT
“WHEN I SAW THESE TOWERING GLASS STRUCTURES FROM
THE WINDOW OF A BUS, TOURING THROUGH SHANGHAI’S
PUDONG DISTRICT, MY RISING ADRENALIN LEVELS CAUSED
ANXIETY IN ME, YET A SENSE OF EXCITEMENT PROJECTILE-LIKE SYMBOLS OF GROWTH,
CS: What would you say to a person struggling with the stigma of HIV? JC: The only advice I can think of is try not to let the three-letter acronym dictate how you see yourself and your life. Everyone comes from a different place and whatever stigma that you come across is probably a reflection of their own personal bias — not anything to do with you as a person.
AND NEGATIVITY. I LOOKED OUT INTO THE BLEAK, WINTRY MELBOURNE DAY AND THE THICK GREY CLOUDS SEEMED OVERWHELMING. BELOW
NEWNESS AND POWER REACHING TOWARD
— LIKE WEAPONS IN COMBAT — THE BLEAK, GREY SKIES ABOVE. THIS PARALLELS THE
THE CLOUDS IN THE GARDEN , I NOTICED THE RED CAMELLIA TREE
EVEN CLOUDS BECAME BIG BURSTS OF FLUFF THAT BROUGHT SOME
EVERY DAY. I FEEL ANXIETY BUT I CAN TURN
KIND OF COMFORT. I DECIDED TO PLAY THIS GAME DIFFERENTLY.
TURNING MY BACK ON SADNESS, I CREATED MY OWN GAME AND PUT ON A HAPPY FACE. I LOOKED TO MY FUTURE WITH MUSIC AND A
ME STRENGTH AND RESILIENCE IN THE FACE OF MY STRUGGLE.”
SMILE. I’M STILL SMILING.”
NO REGRETS, ONLY LONGING
“THIS PHOTO WAS TAKEN FROM A TAXI ON A HOT, STEAMY SATURDAY NIGHT DURING A
VISIT TO HONG KONG. THIS NIGHT HAS PROVEN TO BE SIGNIFICANT IN MY LIFE, AS IT’S
THE NIGHT THAT HIV WAS PASSED ONTO ME, UNKNOWINGLY, DURING A SEXUAL
ENCOUNTER WITH A MAN I PICKED UP FROM A NIGHTCLUB AND TOOK TO MY HOTEL ROOM FOR WHAT WAS TO BE A LONG AND PASSIONATE NIGHT OF UNINHIBITED,
PHYSICAL CONNECTION. I LOOK BACK ON THIS PHOTO AS REPRESENTATIVE OF THE WILD, CRAZY, EXOTIC AND EROTIC NIGHT THAT IT WAS. DESPITE THE OUTCOME, I WOULDN’T
HAVE CHANGED A THING. EVEN THE RESULTANT HIV HAS NOT DIMINISHED THE CHARGED
CONNECTION BETWEEN THIS MAN AND I DURING THAT NIGHT. THERE ARE NO REGRETS, ONLY LONGING. I USE THIS PHOTO AS A REFERENCE TO THE STRENGTH AND RESILIENCE
THAT LIFE HAS AFFORDED ME IN THE FACE OF ADVERSITY. THIS PHOTO TAKES ME TO A
FACING THE RAPID
PLACE WHERE NO MORE HARM CAN COME TO ME.”
“MY RESILIENCE COMES FROM MANY PLACES. UPBRINGING, PAST
CHALLENGES, ACCEPTANCE BY OTHERS, BUT MOST OF ALL IT COMES FROM A DEEP PLACE INSIDE ME THAT SAYS I AM STRONGER THAN
YOU KNOW. THIS PHOTO IS ME HIDDEN BEHIND A WALL OF WATER,
FACING THE RAPID HEAD ON. THIS IS HOW I DEAL WITH STIGMA . I HAVE BEEN DIAGNOSED FOR FIVE YEARS. AFTER INITIALLY
WANTING TO KNOW ONLY WHAT I NEEDED TO KNOW AT THE TIME,
I BEGAN TO EDUCATE MYSELF, VOLUNTEER MY TIME, AND IN DOING SO, HIV HAS TRANSFORMED MY LIFE
STUNNING HOW A SMALL PIECE OF NATURE COULD GIVE ME HOPE.
FEELING THAT HIV STIGMA CAUSES ME
CS: What do you plan on doing with your cash prize? JC: I have purchased a small upright parlour piano. I love music and the piano in particular, and have often utilised the street pianos that used to be around melbourne when I lived there. I’m truly happy I’ve finally been able to purchase something I’ve always wanted.
DO. BACK THEN , EVERYTHING ABOUT HIV WAS BAD NEWS, SAD FACES
IMAGINING THE POWER OF THESE
THIS INTO A WEAPON OF BATTLE
WEATHERING THE STORM
“DIAGNOSED WITH HIV IN AUGUST 1990, I WASN’T SURE WHAT TO
AND INSPIRATION OVERCAME ME IN
— FOR THE BETTER.” — SARAH
positiveliving l 9 l SPrING 2017
explaining the effect HIV has on particular parts of the body
Love your liver
The liver is one of the most crucial and complex organs in the body. For positive people, it is especially important as it processes the drugs used to treat HIV. Without the liver acting as a medicine converter, the treatment would be useless. About the size of a child’s AFL ball, the liver is the second-largest bodily organ after the skin and weighs, on average, around 1.5 kilos, making it the heaviest internal organ. Arguably the hardest-working organ in the body, it performs hundreds of different functions simultaneously. As well as metabolising medication, it changes food into nutrients, creates the blood that circulates around our bodies, produces enzymes that help digest food, creates proteins that help the immune system resist infection, makes cholesterol, stores sugar, removes toxins, and also breaks down alcohol and other potentially harmful chemicals. As well, the liver is the only organ that has the ability to regenerate, making it possible for a person to donate part of their liver to someone else. If left untreated, HIV can increase the risk of liver problems. However, most HIVpositive people on effective treatment experience no problems with their liver at all. Even so, liver function should always be regularly monitored in case health problems appear. Usually, your blood will be
screened every three to six months to keep tabs on the viral load and CD4 count. This process also includes a liver function test so as to measure enzyme levels — high enzyme levels can indicate liver damage. If your HIV medication is found to cause liver damage (a condition known as ‘hepatotoxicity’), your doctor may suggest switching the treatment combination you’re on (although this may not be an option for everyone). People with HIV are also routinely tested for hepatitis.
Maintain healthy weight
Eat a diet of natural foods
Vaccines exist for hep A and B. As for hepatitis C, the virus can be more severe in people with HIV and can progress more rapidly if left untreated. Hepatitis C can be sexually transmitted, particularly among gay men. Risk factors include fisting, drug use and condomless sex. The good news is that, if contracted, hep C can be easily treated with little-to-no side effects and a high cure rate. Learn to love your liver, as a healthy liver is important for our overall health. Because the liver processes nutrients from the food
we eat, one of the best ways to keep the liver in good condition is through healthy eating. Focus on natural foods, and reduce fat in your diet as it puts stress on the liver. Concentrate, instead, on ‘good’ fats found in avocados, fish, nuts and seeds. The best sources of proteins are plantbased foods such as beans, legumes and lentils. Large amounts of fluids (alcohol excluded) are also good for the liver, especially water — aim to consume at least eight glasses a day. Regular exercise is also
positiveliving l 10 l SPrING 2017
Moderate alcohol intake
beneficial to liver health as obesity is linked to fatty liver disease. High cholesterol, diabetes and heart disease can also contribute to non-alcoholic fatty liver disease. Affecting one in ten Australians, it’s one of the most common causes of liver problems. Fat builds up in liver cells, causing abnormal liver function and inflammation, which can lead to liver scarring (cirrhosis). Heavy and sustained alcohol consumption can lead to cirrhosis as well; so, too, overindulgence of recreational drugs. Unchecked, cirrhosis can have serious health implications. Oral contraceptives can also cause fatty liver tumours and should not be used by women who have a history of these noncancerous growths. Some liver problems occur during pregnancy or affect women more often than men, including gallstones and bile duct damage. If your liver isn’t working effectively you may experience symptoms such as fatigue (the most common), nausea, vomiting, decreased appetite, brown urine, and a yellowing of the eyes (jaundice). If you have any of these symptoms it is important you contact your healthcare provider. However, often there are no signs of liver damage until it reaches a late stage, which is why it’s important to have regular blood tests that can detect liver problems before they arise.
Drink lots of water
SHOCKING A NATION
IT’S REGARDED AS ONE OF AUSTRALIA’S MOST ICONIC TV ADS. BUT, AS JAKE KENDALL REPORTS, IT WASN’T SELLING BEER OR CARS OR YEAST EXTRACT — IT WAS SELLING FEAR.
On 5 April 1987, Australian prime-time TV audiences caught sight of a cloaked skeletal figure — scythe in one hand, bowling ball in another — poised to strike down a group of human pins. As the men, women and children (and even a baby) are bowled into oblivion, a doomladen voice-over announces: “At first only gays and IV drug users were being killed by AIDS, but now we know every one of us could be devastated by it.” Daniel Reeders — health consultant and blogger — had just turned six. “My television memories from this time are Mary Delahunty reading the ABC news and the Grim Reaper — Mary was much better coiffed and dressed.” Little Reeders had no idea what the ad meant, but it made an indelible impression. “It was by far the weirdest thing I’d ever seen,” he says. “I found it thrilling — a mini horror movie before bed.” Commissioned by the National Advisory Committee on AIDS (NACAIDS), the Grim Reaper ad suddenly brought the epidemic to mainstream Australia. Before the ad aired, AIDS was confined to the marginalised: gay men, sex
workers, and injecting drug users. Chair of NACAIDS at the time was Ita Buttrose. “When I first saw it, it absolutely chilled me to the bone,” she says. “It was a controversial campaign in that it really shocked people — that was the intention.” Such was the reaction, the ad was pulled amid a public backlash. Originally scheduled to air for 12 weeks, the TV campaign’s run was cut short. The person responsible for the furore was ad man Siimon Reynolds (that’s not a typo — he changed the spelling of his name on numerological advice). “I’m not interested if it ruined people’s dinners,” he says. “They really needed to be shocked.” Former NACAIDS representative, Phil Carswell, remains equally unrepentant. “I don’t regret what the ad provided for us in terms of an open door to every school in the country . . . into every bowls club and social organisation and Rotary. Every doctor, GP and health professional who tried to ignore [AIDS] in the past, now couldn’t.” Research carried out after the TV ad aired found that an incredible 97 percent of Australians had seen it.
Dr Ron Penny diagnosed Australia’s first AIDS case in October 1982. An original member of NACAIDS, Dr Penny was among those who gave the Grim Reaper the green light. He found the reaction astounding. “I think there’s never been anything on television or any media that has ever matched it in terms of impact,” he says, “but no advertising can be without some downside.” The “downside” Dr Penny refers to is the demonisation of people with HIV — particularly gay men. Rather than symbolising death, the figure of the Grim Reaper was perceived by many as representing those with the disease. As a result, the Grim Reaper ad compounded the discrimination and stigma already being levelled at people with the virus. “That campaign added greatly to the burdens carried by those of us who were living with HIV at the time,” says long-term survivor David Menadue. “With our sunken cheeks and thinning limbs, many of us looked not unlike the Reaper himself. So, rather than fearing the virus, people began fearing those with HIV.” As well as further stigmatising an already
bureaucrats about the need to maligned population, the ad fund more public health instilled a sense of fear and campaigns, including more hopelessness amongst those targeted ones aimed at gay men, living with HIV. “With the and needle-and-syringe programs message that ‘AIDS kills’, it gave to combat intravenous people who were ill at the time transmission.” Reeders agrees, less hope that they would “They funded affected survive,” says Menadue. communities to develop targeted, The campaign was also criticised for exaggerating the risk relevant, funny, sexy campaigns and resources that acknowledge AIDS posed to the heterosexual both risk and pleasure,” he says. population. In the ad, the voiceFor all its faults, the Grim over claims that “over 50,000 Reaper campaign perfectly men, women and children now carry the AIDS virus” and “if not stopped, it could kill I’M NOT INTERESTED IF more Australians than World War II”. By way of IT RUINED PEOPLE’S explanation, Reynolds says: DINNERS. THEY REALLY “There was political fear NEEDED TO BE there’d be a backlash against gays if everybody SHOCKED. thinks it’s some kind of gay SIIMON REYNOLDS plague.” As well, he says, “Other countries had captured the fear and uncertainty failed in their AIDS education of the times. After all, in 1987, because heterosexuals weren’t the epidemic was an unknown listening — we really had to wake quantity; there was no sign of a people up.” cure, and treatments were There is no doubt that the rudimentary. Thirty years on, the shock tactics proved extremely Grim Reaper ad remains firmly in effective in alerting people to the the Australian psyche like no existence of AIDS. Most other, and is lauded worldwide as importantly, says Menadue, one of the most memorable “[The ad] did help raise health campaigns ever devised. awareness among politicians and
positiveliving l 11 l SPrING 2017
Peers supporting disclosure Getting an STI diagnosis can be tough. It’s easy to see why so many people avoid sharing the news — be it with partners, lovers or fuck buddies. Even in the best of times, it can be an awkward conversation to have and tricky to negotiate the right language to use, or even how much detail you’re expected to disclose. Notifying your partners of an STI is one of the most responsible things you can do along with accessing the right treatment for you. If it’s an STI that can easily be passed on like gonorrhoea, chlamydia, syphilis, or untreated hep C or HIV, letting your partners know they need to get tested allows them to take care of their own health. It also helps stop you or anyone else picking up the STI, and it can even help build the trust you have for each other in your relationship agreements. There is growing evidence to show that if people living with HIV test regularly there is a reduction in STIs in our communities. Positive life NSW is building
Positive Life is connecting people to peers who have been there before, and are trained and able to answer any questions or concerns you may have — however sticky or sweet. new ways to support people with all the information and guidance they may need to notify their partners and even ‘contact trace’ previous hook-ups and encounters. It’s called Peer-
led Notification. rather than using an anonymous website or a doctor or nurse calling on a person’s behalf using a very clinical approach, Positive life is
connecting people to peers who have been there before, done it themselves, and are trained and able to answer any questions or concerns you may have, however sticky or sweet it may get.
The goal is to help you handle anything that may come up before, during or after letting your partners know, safely and confidentially. As a peer-led organisation, Positive life has an interest in informing and empowering you to be in the driver’s seat, respecting your decisions and supporting you to say the things you want to say in the ways you need to say them. Even if that means just giving you leads to other services like counselling, workshops or other peer-based supports. By empowering you to be in control of your health, to tell who you want to tell, in the way you want to tell them, it means you’ll feel better about yourself, and your partners and fuck buddies are more likely to respect your disclosure and support you in the future. l Give Positive life a call on (02) 9206 2177 during office hours if you have any questions or concerns about living with HIV. We’ve all been there, and it’s not something you have to go through alone.
Subscribe to Positive Life’s ebulletin, Life.mail. The Life.mail ebulletin keeps you in the loop with events, news and opportunities delivered to your email inbox! Subscribe here
PositiveLifeNSW 414 Elizabeth Street Surry Hills 2010 | ) (02) 9206 2177 or 1800 245 677 | w positivelife.org.au positiveliving l 12 l SPrING 2017
Empowering from the inside out our capacity to eventually facilitate the course back here in Victoria,” said Vic Perri, Health Promotion Officer at living Positive Victoria.
The Australian HIV population is ageing well thanks to advances in medical science, but ageing presents its own challenges — whether you’re living with HIV or not. living Positive Victoria and the Victorian AIDS Council (VAC) have collaborated to deliver a two-pronged program to address the issues of ageing with HIV: a peer-led and ongoing support network, along with a self-management workshop. Two peer trainers have already been recruited and undertaken the HIV Positive Selfmanagement in Chronic Disease (PSmCD) training course provided by Stanford medicine, a school of Stanford university and one of the world’s leading teaching and research universities. “The training gave us a great opportunity to actually go through the sessions of the PSmCD workshop itself as a participant and become familiar with the content, while building
PEER SUPPORT NETWORK A big advantage of a peer support network is the safe environment it provides. It’s hugely reassuring for individuals to realise that they are not alone and that there are others who are facing, or have faced, similar challenges. This model has seen success in other programs such as Phoenix for the newly diagnosed and the Positive leadership Development Institute (PlDI). The peer-led ageing support network will focus on improving selfadvocacy, and helping older positive people develop the skills and the confidence to talk about the issues connected to living and ageing with HIV, including how to actively engage healthcare providers in patientcentred care.
The new Victorian HIV Strategy 2017-2020 is a bold and ambitious response to the HIV epidemic. The strategy was launched at the end of June by Health minister Jill Hennessy in the presence of HIV community members, community organisations, and researchers. The minister’s sentiments “to rid Victoria of HIV, and the discrimination and stigma it causes” was welcomed by all. The strategy sets new targets for Victoria of 95-95-95 by 2020, with a commitment to achieve 95 percent of people with HIV to be diagnosed; 95 percent who know their status to be on antiretroviral therapy; and 95 percent of people on therapy to
achieve an undetectable viral load. “It will take a multidisciplinary response to achieve these targets and we’re thrilled that the Victorian Government is taking the lead and setting the tone for the HIV epidemic in Victoria,” said Brent Allan, CEO living Positive Victoria. The strategy focuses on four key areas: l Victorians are supported to prevent HIV transmission l Victorians with HIV will know their status l Victorians will have access to
l Nutrition l Evaluating symptoms l Advance directives l How to evaluate new or
Newly trained peers show off their certificates SELF-MANAGEMENT WORKSHOP The strength in this program is that it will be facilitated by peers and will incorporate evidencebased best practices from the PSmCD training course provided by Stanford medicine. materials will be tailored to consider factors such as diverse sociocultural characteristics. Participants with longstanding and significant comorbidities will benefit in particular as the program places them at the
centre of improving and maintaining a high quality of life. Workshops will run for seven weeks and cover topics including: l Integrating medication regimens into daily life l Strategies to deal with frustration, fear, fatigue, pain and social isolation l Appropriate exercise for maintaining and improving strength, flexibility and endurance l Communicating effectively with family, friends and
alternative treatments So far, two information sessions have been held to introduce members of the community to the program. Discussions have focused on identifying which key issues members are experiencing, with plans underway to commence delivering the workshops and the peer support network in the near future. “We all want to see this project succeed and that will only happen by engaging and listening to what the community wants,” said Perri. living Positive Victoria and VAC will be running workshops and the peer support network later this year. All people living with HIV aged 50 and over in Victoria are encouraged to apply. info@livingpositive victoria.org.au
Hope for an HIV-free future left to right Professor Sharon Lewin, Director of the Doherty Institute; Jill Hennessy, Victorian Health Minister; Dr Eric Glare, Positive Speakers Bureau member; and Christabel Millar, Health Promotion and Communications Coordinator for Positive Women Victoria the best treatment and care and are supported to achieve an undectable viral load l Victorians and affected communities are empowered to speak up about stigma and discrimination. Even though HIV continues to disproportionately affect gay and bisexual men, the Victorian
HIV Strategy reflects the changing complexity of the virus and — for the first time — classes women, transgender men and women, and gender-diverse people as priority populations. “No two people living with HIV can be treated the same, as HIV will affect people differently,” said Christabel millar, Health
Promotion and Communications Coordinator for Positive Women Victoria. “To see the diversity of groups represented in this strategy crossing gender, sexuality and socioeconomic status means we can tailor resources and support to ensure no one gets left behind.” The strategy complements an action plan that will outline tangible outcomes for each of the focus areas. “This strategy is another piece of the HIV response and we hope the action plan will set clear targets and responsibilities for all funded agencies. There is strength in numbers and we anticipate working together with all our partners to see an end to HIV,” said Allan.
living positive victoria | Suite 1, 111 Coventry Street Southbank 3006 | )03 9863 8733 | w livingpositivevictoria.org.au
positiveliving l 13 l SPrING 2017
New film series on stigma Queensland Positive People has launched a new ‘Talking About’ series of films. As Sharna Quigley reports, this time people living with HIV share stories of stigma and resilience.
their family. In light of the findings, QPP decided that it was imperative to reinvigorate the conversation about HIV stigma in Queensland. After all, through perpetuating fear and false information about the virus, HIV stigma affects the
The Talking About Stigma series acts as a call to action for the community to unite in the rejection of HIV-related stigma. It aims to emphasise that it is not solely upon the HIVpositive community to become more resilient to stigma, rather,
debuted at a community launch held in Brisbane and was introduced by QPP’s Executive Officer, Simon O’Connor. “Stigma remains an aggravatingly persistent hurdle that impedes our progress in our response to HIV,” said O’Connor. “Stigma is
Highlighting the lived experience of stigma on film has always been a goal of QPP. A renewed impetus for such a project was born out of research that demonstrated a
lack of noticeable shift in attitudes towards HIV. Although there have been major advancements in the biomedical response to the disease, unfortunately, the wider community response remains stuck in the 1980s. Surveying members of the general population, research commissioned by the HIV Foundation Queensland found that 21 percent of people think you can get HIV from kissing; 13 percent of people think you can get HIV from sharing a drink; 67 percent think you can get HIV from donating or receiving blood; while, shockingly, 47 percent said they wouldn’t welcome someone with HIV into
ABOVE The films premiered at a launch in Brisbane
The participants (left to right) Matt, Aaron, Susan, Jose and Carlos
PHOTOS mErIlyN SmITH
entire community. Stigma surrounding HIV discourages people from getting tested and seeking treatment which, in turn, leads to new infections.
it is incumbent on everyone — whether positive or negative — to unite in the fight against stigma and discrimination. The series of four short films
socially constructed. Stigma is pervasive. It happens at many levels: within employment, within healthcare settings and other institutions, within
community, and at the personal level. In turn, people living with HIV can internalise the community’s perceptions of HIV, which results in very real feelings of anxiety, social isolation and psychological distress.” Featuring a diverse selection of positive people, the films reveal how people living with HIV deal with stigma differently while also showing how the wider community continues to misconceive the virus. The films feature matt — a former AFl player who took a legal challenge to the Victorian Civil Administrative Tribunal, and won; Susan a global HIV activist who speaks of lifting the burden of secrecy around her status, self-stigma, and the fight for visibility of women with HIV; Aaron — a young man whose experience of stigma in the workplace turned his focus to HIV activism; and Jose and partner Carlos — a couple currently navigating Australia’s migration policy. Each film traverses a different aspect of HIV stigma. It is hoped that the films will encourage people in the wider community to put themselves in the shoes of a positive person and reexamine their own perceptions of HIV. Perceptions based largely upon outdated thinking. The HIV landscape has changed dramatically in recent years. A positive person on treatment with an undetectable viral load cannot pass the virus on to their sexual partners. l Talking About Stigma is the third and final instalment of QPP’s ‘Talking About’ series — previous instalments include Talking About HIV and Talking About Treatment. The first stigma film to be released — matt’s story — can be viewed here.
queensland positive people | 21 Manilla Street East Brisbane 4169 | )07 3013 5555 or 1800 636 241 | w qpp.net.au positiveliving l 14 l SPrING 2017
POSITIVE VOICES POSITIVE PEOPLE SHARE THEIR EXPERIENCES OF LIVING WITH HIV
WITH AN AUSSIE-LED STUDY REAFFIRMING THE EFFECTIVENESS OF TREATMENT AS PREVENTION, HIV-POSITIVE GUYS SHARE WHAT IT MEANS TO BE UNDETECTABLE. DAVID Knowing that I can’t pass HIV onto a sexual partner while I’m undetectable makes me feel much more confident about negotiating unprotected sex and not worrying so much about whether a partner is the same status as me. That HIV-positive people like me are no risk gives me hope that there will be less stigma between poz and neg gay men and within the community generally.
GABRIEL u=u to me is a real possibility to eradicate stigma and ultimately HIV/ AIDS. Along with my work as an activist/advocate, staying undetectable is an integral part of my commitment to ending the epidemic — while considerably expanding my dating options! Knowing that we can't transmit the virus to a trusted partner (I’m single), allows us to enjoy our bodies without fear.
BRUCE When I first heard about u=u (undetectable equals untransmittable), it really blew my mind. I've been fortunate to be on effective treatment since I was
diagnosed HIV-positive in 2003, and I started testing undetectable shortly thereafter. The realisation that no one has been able to get the virus from me from a sex act during most of my HIV life is news that needs to be shouted from the rooftops!
effective options. An undetectable viral load is an equaliser that helps us unpack the fear and outdated notions left over from the early years of the pandemic. But to do that, people need to get informed and stop perpetuating ignorance and obstruction.
I think what surprises people most when I talk to them about [HIV] now is that, being on the right medication, my chances of transmitting the virus are negligible. I wish this was reported a bit more, rather than stories like ‘HIV monster goes around and infects hundreds of people’, which breed fear and always turn out to be untrue anyway. There’s still so much to be done on the ignorance and stigma side.
Once it seemed inconceivable that someone would choose to be open about their HIV status, but now more and more people are refusing to conceal it. Social media, in particular platforms like Twitter where people can maintain partial anonymity, seem to be filling with more openly HIV-positive commentators. Gradually, the avatars are shifting from the artfully concealed faces to full on ‘stare me in the eye and know me’ pictures. Increasingly, we are talking about embracing an identity where we are openly living, without shame, not just as people with HIV but, crucially, as people with an undetectable virus.
CHARLIE When I won mr Gay New Zealand as an openly HIV-positive advocate, I encountered all manner of pushback and stigma. What got me through it was the incontrovertible power of u=u, and the science behind an undetectable viral load and how that fits in the prevention landscape. Times have changed for the HIV response and now we have highly
MICHAEL I am still adjusting to being HIV-positive, that I cannot lie about. After all, as a gay man, my brain had been trained from a young age to fear HIV. But now, as an
HIV-positive person, I know that it’s us — the people who are diagnosed, and know they have the virus, but are on medication to suppress it — who are the people taking precautions to end HIV transmission. We don’t want to, and can’t, pass on HIV. Now I know I’m healthy and can’t pass on the virus, I’m enjoying every moment life brings. But there are going to be many challenges I have to face, because the stigma has not gone away. People fear HIV because they don’t understand it. If we removed the fear, we could stop HIV transmission. It’s as simple as that.
ERIC The first time I read an article in a medical journal reporting that being undetectable meant that I could not transfer HIV to another person, I almost did not believe it. It wasn't until I heard my own doctor confirm this information that I began to trust it. We have to provide people with information that is current, tested and factual. Now, along with condoms, providing easy access to PrEP and u=u, we can better equip people to protect themselves from contracting HIV. This allows people to relax a little more around this subject. HIV should no longer be an obstacle to love and intimacy for people living with HIV.
The realisation that no one has been able to get the virus from me from a sex act during most of my HIV life is news that needs to be shouted from the rooftops! positiveliving l 15 l SPrING 2017
Caulis are cool FOR LIVING WITH HIV 1 Learn as much as you can. The more you know, the more you’ll be empowered to manage the disease — and it is manageable
2 Start treatment immediately — the sooner you’re on antiretrovirals, the sooner the HIV will be suppressed to an undetectable level
3 Meaning, you cannot pass the virus on to your sexual partners
4 Don’t walk alone — whether it be friends, family or your local HIV organisation, seek out support
5 Be kind to yourself. Use positive distractions (eg, mindfulness and exercise) to help promote emotional and physical wellbeing
Often overlooked for more in vogue veg, the cauliflower deserves some love as it contains an array of nutrients including vitamins, minerals, antioxidants and other phytochemicals. Caulis also contain unique plant compounds that may reduce the risk of several chronic diseases — including heart disease. They help the body detoxify and are an important source of dietary fibre for digestive health. Caulis also help regulate blood pressure, and reduce cholesterol and inflammation levels. As well, caulis are good for strong, healthy bones. Members of the Brassica family of vegies, cauliflowers are related to broccoli, cabbage and kale. Although most commonly white, the head (or curd) of a cauliflower can also be orange, green or purple. Extremely versatile, caulis can be roasted, boiled, baked, steamed or fried. However, for maximum health benefit they’re best eaten raw.
The great fruit So-named because they grow in bunches like grapes, the grapefruit is a new, radical fruit — a hybrid of orange and pomelo. Discovered in Barbados, the grapefruit ranks high among its fellow citrus fruits because of its distinctive sour-yetsweet flavour and its abundance of nutritional properties. Packed full of vitamin C, the grapefruit makes for an excellent antioxidant that bolsters the immune system. It also reduces inflammation, alleviates acidity and contributes to a healthy heart. When peeling grapefruit, be sure to retain as much of the white, pulpy tread (the pith) just beneath the skin. It’s here that the goodness is found. While yellow grapefruits are in season in Australia all year round, the pink variety is only available between August and October. positiveliving l 16 l SPrING 2017
QUOTEUNQUOTE We know how to prevent infection, and treatment is available for people living with HIV. The issue now is the fight to remove the stigma associated with HIV, along with making sure everyone, everywhere can have access to accurate prevention information and access to medications. Australian actress Naomi Watts
of people with HIV are on treatment. It’s the first time in history that more are on treatment than not.
Published by the National Association of People with HIV Australia, Positive Living is a digital magazine for people living with and affecte...
Published on Aug 31, 2017
Published by the National Association of People with HIV Australia, Positive Living is a digital magazine for people living with and affecte...