Page 1

positiveliving FOR PEOPLE LIVING WITH AND AFFECTED BY HIV | SUMMER 2016-2017

Live for the moments this summer


Living for the moments

HIVCURE From press hyperbole to a ‘stunning’ new treatment approach

A new NAPWHA campaign has been launched featuring positive people talking about where HIV fits into the broader picture of their overall health and wellbeing.

6

Make it a berry Christmas 18

10-11 THE

DOUBLE WHAMMY Living with HIV is one thing; living with a secondary chronic condition such as hepatitis C is doubly difficult. Three coinfected positive people share their experiences.

8-9

what’syourproblem?

Presenting Prezcobix

We’ve come a long way MyLife+ app is an innovative new tool for people with HIV. Anything that seeks to shift the HIV narrative and empowers us to be more than those three letters, says Nic Holas, is welcome.

positiveliving ISSN 1033-1788 EdITOr Christopher Kelly

david menadue Vicky Fisher CONTrIBuTOrS rebecca Benson, Nic Holas, david menadue, dr louise Owen, miranda Smith dESIGN Stevie Bee design ASSOCIATE EdITOr PrOOFrEAdEr

COVEr ImAGE xx

7

thepillbox

12

12 Keeping your heart healthy

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: christopher@napwha.org.au 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: march 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 SummEr 2016-2017


thenews INDIGENOUS MEN

HiV rates double in five years rates of HiV infection among aboriginal and torres strait islander men have doubled in the past five years. that’s the finding from the Kirby institute’s annual surveillance data. Probable factors include a particularly young Aboriginal and Torres Strait Islander population living in remote and regional areas without readily accessible HIV testing and treatment services. Also, the Indigenous population records high notifications of other sexually

transmissible infections, making the community more susceptible to contracting HIV (cases of gonorrhoea, for instance, are ten times that of the general population). Meanwhile, in the general population, HIV notifications remain stable for the fourth year in a row at 1,025 cases. The predominant transmission route remains

World-first app for plHiV the world’s first health and wellbeing app for people with HiV has launched in australia. Created by ViiV Healthcare in consultation with the positive community, MyLife+ provides individuals with a wide variety of tools to help them manage their HIV. Users can track CD4 counts and viral loads; store contact details of doctors and specialists; be reminded of ‘pill time’ and appointments; as well as monitor emotional wellbeing. The app also contains HIV-related news and information curated by the National Association of

People with HIV Australia (NAPWHA). It’s free to download, and compatible with Android and Apple. (See page 7.)

from the editor

tell us what you think We’re always trying to tweak and improve Positive Living so that it remains relevant to you, the reader. With that in mind, we’re running an online survey. It takes just a short while to complete and participants remain anonymous. We’re particularly interested in what you like to read and what device you prefer to read it on. The PL team would greatly appreciate it if you could find the time to complete the survey. You can access it here. In the meantime, summer’s arrived! And holiday time is near. Enjoy the break . . . and live the moments. Christopher Kelly

a lack of access to HiV testing and treatment services is cited as one factor for the dramatic rise in diagnoses. through men having sex with men — 68 percent of all new diagnoses in 2015. In better news, 2015 saw a

record increase in the number of people testing for HIV (by 27 percent) and a continued decline in late diagnoses. This means we

might be winning. Although “very pleased” with the results, Kirby Institute’s Associate Professor Rebecca Guy said that in order to meet the 2020 elimination goal, Australia must “continue to enhance its prevention programs, and increase new technologies such as home-testing kits and preventative drug therapies like PrEP.” In all, the report estimates there are 25,313 people living with HIV in Australia. l read the report in full here.

Bringing science to justice When it comes to HiV, the law is lagging way behind the science — that’s the opinion of a group of australian HiV experts. In a statement published in the Medical Journal of Australia last month, leading researchers and scientists — including Professor Sharon Lewin and Professor Andrew Grulich — argued that “criminal cases involving HIV transmission or exposure require that courts correctly comprehend the rapidly evolving science of HIV transmission and the impact of an HIV diagnosis.” Laws pertaining to reckless transmission of HIV date back to a time when it was a far more serious condition. Today, HIVpositive people can expect to live almost as long as their HIVnegative peers. “Most people with HIV are able to commence simple treatment providing them a normal and healthy life expectancy,” read the statement. The document also cited scientific

positiveliving l

evidence that shows the risk of HIV transmission to be negligible if a positive person is on treatment and has an undetectable viral load. “The evidence demonstrates that most sexual encounters entail low to no possibility of HIV transmission.” While acknowledging that cases of deliberate transmission of HIV are “extremely unusual”, the group urged authorities to change behaviours through counselling rather than the courts. “Given the limited risk of HIV transmission per sexual act and the limited long-term harms experienced by most people recently diagnosed with HIV, appropriate care should be taken before prosecutions are pursued,” continued the statement. To explain why Australian law and guidelines lag behind international best practice, Aaron Cogle, executive director of the National Association of People with HIV Australia (NAPWHA), said: “Stigma, fear and

3 l SummEr 2016-2017

discriminatory perceptions of HIV influence the decision to proceed with criminal charges. HIV is treatable, but criminal charges perpetuate the inaccurate position that HIV is still a death sentence and deserving of a severe punishment.” One of the unfortunate side effects of prosecutions is the misinformed and stigmatising media reporting that often accompanies such cases. “This statement does not change the law, but provides an authoritative scientific statement on the risks of HIV transmission,” said Cogle. “As the authors noted, we have seen scientific concepts inconsistently applied in cases involving HIV transmission. We have encountered laws and regulations around HIV transmission being slow in catching up or reflecting the scientific advances in HIV treatment and modern realities of living with HIV. This must change.”


thenews

disclosure laws to be repealed disclosure laws introduced in nsW during the height of the aids epidemic are to be overturned early next year. In 1985, it became an offence for a person with HIV to have sex without first disclosing their status. More than three decades after the Wran government enacted the legislation it will be removed from the Public Health Act, bringing NSW in line with the rest of the country. The move acknowledges the latest science that shows that, if HIV is treated

important place in HIV prevention, but the right way to get people living with HIV to disclose is to address stigma and create a sexual culture in which disclosure can be done safely, not by forcibly breaching the right to keep your HIV status private if you've taken appropriate precautions to prevent transmission.” Amid the panic and fear swirling around the early days of the epidemic, people with HIV were likened to lepers, with calls

and becomes undetectable, then a person becomes un-infectious. A review by the NSW Health Ministry viewed the offence to be a “blunt and ineffective tool”. Paul Kidd (pictured at right), from the Victorian HIV Legal Working Group, agrees: “Laws like section 79 don’t do anything to prevent HIV transmission — in fact they can be counterproductive, by discouraging testing and creating a false sense of confidence that people living with HIV will disclose. Disclosure has an

made for them to be quarantined; some politicians of the time wanted the penalty for nondisclosure to be 12 months’ jail. Professor David Cooper, who diagnosed Australia’s first case of HIV while at St Vincent’s AIDS unit in Sydney, welcomed the repeal. “Our knowledge of HIV transmission, care and support has changed fundamentally since that time,” he said. “There are now a significant number of ways to effectively stop the transmission of HIV.”

spitting laws Smoking more condemned harmful than HIV delegates at australia’s national HiV/aids conference held in adelaide last month condemned the governments of south australia, Western the risk of australia and the territory transmission northern over laws that force people of HiV or of spitting other blood- accused on or biting law borne viruses enforcement to undergo from saliva officers mandatory HiV testing. is zero. “Australia has a proud record of basing its HIV response on evidence-based policy,” said Adjunct Associate Professor Levinia Crooks, CEO of

the Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM). “These laws are antiscientific — the risk of transmission of HIV or other blood-borne viruses from saliva is zero. There has never been a case of HIV transmission from spitting or biting in Australia. There is no justification for invading the privacy of people in custody by forcing them to undergo blood tests when there is no risk to the officer.” The conference passed a resolution expressing “profound disappointment” in the laws, which were passed in SA and WA in 2014, and in the NT earlier this year.

smoking is bad for — but you know that. but do you know that among positive people on treatment smoking is the leading cause of death? That’s according to a Harvard Medical School study. “Smoking is the leading killer of people with HIV who are on antiretrovirals,” said study author Dr Krishna Reddy. There was a time when if you were HIV-positive you wouldn’t live long enough to experience the ill-effects of smoking. But today, people with HIV can expect a similar life expectancy of those without the virus. Meaning, the

damage caused by tobacco is catching up with positive smokers, putting them at high risk for cancer, lung disease and heart disease. (See page 12.) “It is well-known that smoking is bad for the health,” said Reddy, “but we demonstrate in this study just

how bad it is — we actually quantify the risk.” For example, positive men and women who smoke and who started treatment at age 40 lost 6.7 and 6.3 years of life expectancy respectively, compared with positive nonsmokers. But the study also found that if those smokers quit at 40, they would regain 5.7 and 4.6 years of life expectancy. “We show that even people who have been smoking till age 60 but quit at age 60 have a substantial increase in their life expectancy compared to those who continue to smoke,” said Reddy. “So it’s never too late to quit.”

needle and syringe milestone australia’s first needle and syringe program marked its 30th anniversary in november. Resorting to civil disobedience, in November 1986 a group of healthcare workers from St Vincent’s hospital in Sydney supplied injecting drug users with clean syringes — setting an

syringe program (NSP) was hugely controversial at the time and the group faced intense and relentless hostility. Opponents argued fiercely that such a program would encourage illicit drug use and “send the wrong message”.

example to the world. “We were prepared to take substantial risks in breaking the law because we knew that HIV represented a serious health threat to the nation,” Alex Wodak, one of the instigators of the scheme told The Guardian. Implementing a needle and

positiveliving l

4 l SummEr 2016-2017

Rates of HIV among injecting drug users remain extremely low in Australia and advocates are convinced the early and rapid expansion of NSPs to be a critical factor. The Australian response has been widely copied worldwide with NSPs provided in more than 80 countries.


thenews

promising vaccine Progress on SA vaccine trial under way a widespread trial of a potentially ground-breaking vaccine against HiV has begun in south africa. Although modern treatment effectively suppresses the virus to undetectable levels, infection rates continue to rise. A vaccine, say experts, is the only way the epidemic can be curtailed for good. The vaccine being trialled is a modified version of RV144 that proved modestly successful when it was tested in Thailand in 1999. Researchers remain hopeful that the new vaccine — HVTN702 — will lead to improved outcomes. “HIV has taken a devastating toll in South Africa, but now we begin a scientific

exploration that could hold great promise for our country,” said Dr Glenda Gray, CEO of the South African Medical Research Council. “If an HIV vaccine were found to work in South Africa, it could

dramatically alter the course of the pandemic.” Around 5,400 participants aged 18 to 35 will be enrolled onto the trial — two-thirds of them women. The aim is to present regulators with a vaccine that records at least 50 percent efficacy. “We’ve never treated our way out of the epidemic,” said Professor Linda-Gail Bekker of the University of Cape Town and president of the International AIDS Society. “There’s no doubt we have to have primary prevention alongside treatment in order to get HIV under control, but we’re not going to get HIV eradication without a vaccine. That is very clear.”

adelaide researchers have made progress towards developing a vaccine against HiV. The two-pronged approach — a common-cold virus employed to introduce a DNA-based vaccine into the body — managed to infiltrate the gut and cavities, the most common targets of HIV infection. “You need to get protection where your body encounters the virus first and you need to stop the virus from either entering or you need it to stop replicating and stop it from spreading,” said University of Adelaide researcher, Dr Branka Grubor-Bauk

(pictured above). Following tests on mice, the method achieved a “considerable reduction” in infection. Grubor-Bauk said it was crucial that more research is carried out. “We’re hoping our discovery is definitely pointing us in the right direction,” she said. l For more science see page 6

special report christopher kelly

More than a number Gaëtan dugas — the man dubbed ‘patient Zero’, a term used to identify dugas as the source of the Western aids epidemic — has, after more than three decades, been scientifically exonerated. By analysing blood samples from the 1970s, researchers have been able to clear the reputation of one of the most stigmatised figures in the history of the epidemic. The findings — published in the journal Nature — show conclusively that, rather than being the first person in the US to become infected and erroneously accused of wilfully spreading the disease, Dugas was simply one of thousands of gay men who were unknowingly HIV-positive before such a status had been recognised. “No one should be blamed for the spread of a virus that no one even knew about,” said co-author of the research, Dr Michael Worobey from the

Gaëtan dugas University of Arizona. Matching the new findings with previous data, researchers now know that HIV spread to the Caribbean from Africa in the late 1960s before a subtype arrived in New York around 1971 — a full ten years before the first AIDS cases were identified in Los Angeles. “New York City acts as this hub from which the virus moves to the west coast somewhat later and eventually to Western Europe and Australia and Japan and South America,” said Worobey.

Dugas, a French-Canadian flight attendant who died of an AIDS-related illness in 1984, came to prominence three years later when he featured in Randy Shilts’s bestseller And The Band Played On. In the book, which chronicles the early years of the AIDS epidemic, Dugas is outed and blamed for playing “a key role in spreading the new virus from one end of the United States to

positiveliving l

5

the other”. The media seized on the story, with the New York Post describing Dugas as “the man who gave us AIDS”. Far from being a malicious spreader of disease, Dugas was something of a hero. It is thanks to his cooperation with researchers that scientists were later able to definitively link HIV with sexual activity. Unfortunately, it was through

l SummEr 2016-2017

this association that Dugas got saddled with the infamous moniker ‘Patient Zero’ — the ‘O’ next to his name was widely misunderstood to be a number when, in reality, it was a letter indicating that Dugas was living “Outside California”. The hysterical reaction of the media towards the epidemic was encapsulated in The UK Sun, which ran the headline “The Gay Plague”. A lengthy Time feature, “The New Untouchables”, published in September 1985, detailed the extent of AIDS-related discrimination, concluding, “Anxiety over AIDS in some parts of the US is verging on hysteria.” As Steven W Thrasher writes in The Guardian, Dugas’s exoneration is an opportunity “to retire the idea of the HIV/AIDS scapegoat. Let’s stop the shame and blame, so that we may move on the challenge of tackling the real, treatable and preventable ways HIV is transmitted.”


HIVCURE

Press claims that a man has been cured of HIV are way off the mark; and “stunning” results of a study trialling a new treatment approach may pave the way towards a functioning cure.

tHe Media Has been at it aGain, claiMinG tHat a cure For HiV is iMMinent. but, as Miranda sMitH reports, tHe Headlines sHould be taKen WitH a Grain oF salt. First up, some background: researchers from several institutions in the uK (including Imperial College london, and Oxford and Cambridge universities) are running a clinical trial. The research in Viral Eradication of HIV reservoirs (rIVEr) study is trialling a twopronged approach to reduce the HIV reservoir. It is a small study, aiming to include 52 people newly diagnosed with HIV. In the trial, all participants will be given combination antiretroviral therapy (ArT). Half of them will also receive additional treatments to reduce their HIV reservoir. The treatment consists of two separate HIV vaccines to boost the immune system, and a short course of an extra drug — vorinostat — to ‘wake up’ latent HIV. This strategy is described as ‘kick and kill’ (the vorinostat flushes HIV from its hiding places in the viral reservoir, while the boosted immune system destroys the newly woken infected cells).

On the brink of hyperbole

Whoa, let’s not run away with ourselves here. One man has completed treatment, and all we know so far, is that he did so safely. That he has no detectable virus in his blood is not evidence of a cure. remember, he is on antiretroviral therapy and most people on ArT do not have detectable virus in the blood. The researchers have not yet looked at his viral reservoirs, and the full results of the trial are not expected until 2018. It is also important to note that the trial will not involve stopping antiretroviral therapy, so it cannot be known whether the participants are able to control the virus without the assistance of ArT. While the rIVEr study is an interesting one to watch, any reporting at this stage is speculative at best. We should wait until the full trial results come out in two years’ time before starting to get overly excited about the discovery of a cure.

l Full details of the rIVEr trial, researchers have created an animation to explain the strategy. In October, The Sunday Times in the uK reported that, having completed the trial, a 44-year-old

man showed no sign of the virus in his blood. This, said The Sunday Times, put researchers on the “brink of a cure”. Similarly, the uK’s Telegraph reported that a

cure was “close”. Nearer to home, online, Brisbane’s Courier Mail linked to the story with the following: “man miraculously ‘cured’ of HIV”.

including the study protocol, can be found here.

l more cautious (and realistic) coverage of the results can be read here and here.

FINDINGS MAY LEAD TO FUNCTIONING CURE described by researchers as “a complete first”, a new study suggests that an antibody treatment ‘cures’ monkeys of siV (the non-human primate version of HiV). In the American trial, eight monkeys were given antiretroviral therapy (ArT) before being infused with an antibody usually associated with treating Crohn’s disease (gut inflammation). more than nine months after the dual combination treatment had stopped, all eight monkeys had suppressed levels of SIV in their blood. In the animals that

were given a placebo antibody, the virus returned to high levels within a fortnight of the halting of ArT. “The results knocked us out — they were so stunning,” said Anthony Fauci (pictured at right), a leading immunologist who heads the uS National Institute of Allergy and Infectious diseases (NIAId). The findings have led to predictions that the search for a cure for HIV will now swerve in a completely new direction. Professor Sharon lewin of the doherty Institute in melbourne said the trial

positiveliving l

produced “very convincing data”. However, she admits researchers are baffled by the findings. “Whether it’s a quirk of the monkey model, we don’t know,” said lewin. It’s also not known exactly how long the viral suppression will last. In an effort to discover more, further trials will be conducted. Indeed, studies are already underway on people with HIV. “We’re going to find out very soon whether this is all a bunch of nonsense or actually works,” said Fauci.

l For more cure news, visit hivcure.

6 l SummEr 2016-2017


We’ve come a long way by Nic Holas in the last few years, there has been a monumental shift in the way people living with HiV see ourselves, and the way the rest of australia sees us. now, we might finally be ready to cast off the outdated idea that HiV could limit our life in any way, shape, or form. it’s not all up to us, but as a community, the time is right for us to make that demand — of ourselves, each other, and those around us. This month marks four years since I started my journey as an HIV activist. Hardly a blip on the radar when you consider how many decades my fellow HIVpositive community members have been fighting this good fight. However, in that four years, there has been much change and I find myself reflecting on what feels like a quantum leap from 2012 to today. We’ve seen an increase in HIVisibility in the community and in the media, thanks to big moments like the 2014 AIDS conference in Melbourne. We can see a growing acceptance that an undetectable viral load means it is virtually impossible to pass on HIV to our sexual partners, thanks to the results of the PARTNER study. We’ve seen our

HIV-negative friends and lovers embrace new forms of prevention via PrEP. The only serophobic law on the books in Victoria was repealed. Women living with HIV are now integrated into most campaigns. We’ve still had a few missteps in that time. AIDS isn’t “over”, despite some over-excited claims earlier this year. Overall, HIV rates have plateaued but new infections in Indigenous communities and in the heterosexual population are increasing. HIV criminalisation continues to occur. The shape and structure of our HIV community organisations are changing. Some of these organisations have not and will not survive, but new energies and new movements have sprung up. At the heart of this change is, to borrow an ugly marketing term, a degree of perception management. How we as people living with HIV see ourselves is of paramount importance, but for that to go beyond the clunky and sometimes unhelpful world of identity politics and the empty aphorisms of the wellness movement, we need to figure out where HIV sits in the broader picture of our health and life.

That’s why it is so encouraging to see our national peak body, NAPWHA, refocus on HIV as an aspect of our lives, instead of being the thing that defines us. At the heart of this new focus is an app developed with support from ViiV Healthcare — Mylife+ — as well as a new campaign featuring real people living with HIV, speaking about where HIV fits into the broader picture of their overall health and wellbeing (see pages 10-11). This is a welcome, if not slightly overdue, acknowledgement of where the HIV movement in Australia needs to get to. For too long, the organisations charged with representing us have been beholden to an HIV narrative that, at best, gently reminds us that the Grim Reaper days are behind us and, at worst, is incapable of letting go of them. There is space for everyone in the next phase of living with HIV in Australia. There are those who survived the worst days, whose experiences and struggles defined what was a world-leading response to the AIDS epidemic.

positiveliving l

7

There are those who came to HIV in the awkward inbetween period where it was too hard to talk about what we’d been through, and as a result, advocacy and activism went silent or unheard. There are those who have arrived recently to our country, from places that continue to experience an AIDS crisis the likes of which our Western experiences can’t hold a memorial candle to. Then, there are those for whom HIV is entirely experienced in the 21st century, with a fast-tracked path to a one-a-day treatment regime (if that’s what they choose) and a lived reality in which HIV is just one of many potential physical or mental health conditions and broader social issues. Any app or campaign that aims to go beyond the needs of our high-needs or newly diagnosed poz community members is a necessary and welcome step. That is not to say those two groups are not deserving of attention and focus, in fact, as the landscape of the HIV movement in Australia changes it is incredibly important that we as a community do not

l SummEr 2016-2017

forget those who struggle with their HIV. That’s why My Life+ is a promising addition to the HIV toolbox in Australia. It helps people living with HIV chart their journey beyond pill reminders and viral load test results. For people juggling coinfections and treatments for mental health or other chronic conditions, the app allows them to monitor their entire health experience. Beyond the world of medications, reminders, and doctors’ appointments, the app also allows people living with HIV to track how their daily life events are impacting their happiness and sense of self. The app may not be for everyone, but anything that seeks to shift the HIV narrative in Australia and empowers us to be more than those three letters is welcome. Nic Holas is an HIV activist, writer, and co-founder of The Institute of many (TIm), Australia’s largest independent movement for people living with HIV. Nic has been engaged by NAPWHA and ViiV Healthcare as a community advocate for the mylife+ app.


as a lonG-terM surViVor oF HiV, andreW Had liVed tHrouGH tHe trauMa and stiGMa oF tHe early years oF tHe epideMic; a tiMe WHen people liVinG WitH tHe Virus Were seen as pariaHs to be sHunned and sHaMed. When Andrew was told he had hepatitis C in 2008, it was like going back 20 years. “What I

estimated 3,000 people in Australia living both with hep C and HIV. The hepatitis C virus (HCV) can be more severe in people with HIV: it can progress more rapidly if left untreated, leading to problems such as fatigue, nausea and, in some people, liver cirrhosis — which can be fatal. Until earlier this year, previous hep C treatments came with baggage: acute side effects and months’ long adherence (24-48 weeks). However, this year, new hep C treatments called direct acting antivirals (DAAs) became available in Australia without restriction. When it comes to

Matthews is currently running a trial called cease. Up to 1,000 positive people coinfected with HCV will be studied so as to measure the effectiveness of the new DAA therapies in people with HIV. So far, says Matthews, the results are promising: “It seems that people with HIV on the new treatments clear the virus as well as people without HIV. This was not true of the previous treatment regimens,” she says. tHe old treatMents Were an ordeal Andrew was living in London at the time of his hep C diagnosis and the only treatment that was

antidepressants.” Even though he had been told there was only a 50-50 chance that he would beat the virus, to his great relief, Andrew received the all-clear. His partner, David, wasn't so lucky. “During that time, my partner and I were fastidious in trying to prevent me getting infected again. We’d be very careful not to share toothbrushes, razors and so on — and we were very careful around sex.” So Andrew was shocked to get a call from his doctor in 2012 saying that he had been reinfected with hep C. “The only risk factor we could think of was a threesome where a sex partner

that he and his partner were, once again, serodiscordant. It wasn’t until this year that David finally cleared the hep C virus himself after gaining access to DAA treatment through the CEASE trial. “The latest drugs are such a breeze compared with the earlier regimens,” says Andrew. “The feeling David and I had when we knew we were hep Cfree was indescribable. It has done so much for our relationship and to boost our feelings of health and wellbeing.” Just one idu experience tHe cause Philip has been HIV-positive for

THE

DOUBLE

WHAMMY Living with HIV can have its challenges; living with a secondary chronic condition is doubly difficult. David Menadue spoke with three positive men coinfected with hepatitis C.

didn’t expect was the shaming I received from some other gay men — including HIV-positive ones,” says Andrew. “These negative responses soon led me to keep quiet about my hep C; I felt the need to go back into the closet. There wasn’t what I’d call a ‘hep C community’ in the way there is a HIV community so I felt very unsupported.” While he may have felt unsupported, Andrew was far from alone. There are an

treating hep C, DAAs are nothing short of ground-breaking: they’re easily tolerated with little-to-no side effects and have a 95 percent cure rate. As well, the duration of the treatment program is just 12 weeks. “We now have an important opportunity in Australia to eliminate hepatitis C within the [HIV] community and prevent further ongoing transmissions,” says Associate Professor Gail Matthews from the Kirby Institute in Sydney.

available back then was the old 48-week interferon/ribavirin regimen. “I had some time between jobs so I started treatment, knowing it would be a difficult experience. Interferon had to be injected once a week and it would cause these flu-like symptoms for three or four days. Just when you recovered, you would have to have another shot. Ribavirin, likewise, played with people’s moods and when my partner was on it, he required

positiveliving l

8

was pretty rough, even though he was wearing a condom,” he says. This time, Andrew was put on a new treatment combination. Not only had the troublesome interferon been replaced by a drug called sofosbuvir, but — at 24 weeks — the course of treatment was half the duration of the old regimen. Having completed the course, Andrew was found to have cleared the virus. This good news was dampened, however, by the fact

l SummEr 2016-2017

almost two decades and became coinfected with hep C in 2002. “I had been married and started a gay sex life in my forties. I wasn't very savvy about preventing HIV and didn’t know anything about hep C. One night I was offered recreational drugs for the first time and was quite shocked when injecting equipment was produced. I tried it but it didn't do much for me so I thought little more about it.” Six months later, Philip got a


reinfection — particularly for positive people and gay men who might be involved in ‘sexually adventurous’ practices, such as fisting, sex toys, or injecting drug use. Reinfection under the old regimens meant that sometimes the HCV treatments wouldn’t work a second time. We have yet to see if this happens with the new DAA treatments so all HIVpositive people are advised to take precautions to avoid hep C transmission in the first place. Using condoms is the surest way to prevent the sexual transmission of HCV.

PAUL I don't think I realised how much the virus had been affecting my energy levels and my emotional health. I felt re-energised with a much better mental focus. It was a major change — a Lazarus effect.

lacK oF understandinG about sexual transMission When, in 1999, Paul was told he had hep C he was most surprised.

threatening disease. When Paul’s doctor suggested he embark on a 24-week trial program of sofosbuvir and ribavirin, he enthusiastically accepted. “I suffered quite severe anaemia from the ribavirin but, at the end, I'd cleared [the HCV] and I immediately felt so much better,” says Paul. “I don’t think I realised how much the virus had been affecting my energy levels and my emotional health. I felt reenergised with a much better mental focus. It was a major change — a Lazarus effect.” Although the cure rate for hep C these days is extremely high, there is always a risk of

call from his doctor saying there was an indication in his blood of an interaction with one of his HIV drugs, most likely caused by a hep C infection. “My doctor coyly asked me whether I was an injecting drug user,” says Philip. “‘Of course not,’ I replied — and then I remembered that one episode. I was so ignorant of hep C that I didn’t even realise it could be a terrible thing for your health. I was only focused on HIV — as was most of the

“Like most gay men at that time, I didn't think I could get hepatitis C through sex. I hadn’t been injecting drugs, which was thought by most people, including doctors, to be the principal method of [hep C] transmission. So the diagnosis came as a big shock,” says Paul. Having lived with HIV for almost a decade and come out the other side, Paul found it very hard to accept that he had acquired another potentially life-

PHILIP I was so ignorant of hep C that I didn't even realise it could be a terrible thing for your health. I was only focused on HIV — as was most of the community, to be honest.

community, to be honest. This included my doctor, to some degree, who said there was no urgency to treat my hep C at that stage.” Earlier this year, Philip’s doctor recommended that he start on the new DAAs. “I didn’t notice any side-effects and the 12-week treatment cycle just involved taking an extra tablet. I’d recommend it to anyone who is coinfected,” says Philip.

positiveliving l

9

l SummEr 2016-2017

However, as Paul points out: “It’s fine to say that the best way to prevent hep C sexually is to just use condoms, but that won't work for all. The best way to reduce the risk of hep C in the HIV community is to get as many coinfected people to treat as possible — and for people to regularly test for it.”

ANDREW The feeling David and I had when we knew we were hep C-free was indescribable. It has done so much for our relationship and to boost our feelings of health and wellbeing.

l For more information on the CEASE study contact project coordinator Arlen Wilcox on (02) 9385 9970; or at awilcox@kirby.unsw.edu.au l For more about how to avoid sexual transmission of hepatitis C head to thenewdeal.org.au l For general information about hep C visit Hepatitis australia l more information is available here and here.


ruAn: Being on

treatment has made me feel at ease and more in control.

Living for the moments A new campaign has been launched featuring positive people talking about where hiv fits into the broader picture of their overall health and wellbeing. rebecca Benson reports.

looking after yourself and managing your HiV takes far more than just a prescription. it’s about building a good and trustful relationship with your doctor; it’s about nurturing relationships with family and friends; it’s about being mindful of your mental health; it’s about being proactive in managing your wellbeing. it’s about living in the moment — and enjoying those moments.

being upfront and open about how life with HIV is for them,” says NAPWHA Executive Director Aaron Cogle. “This campaign is really about community,” he says. “It was developed by community, for community.” Rolling out across various platforms, the campaign is designed to help and empower people with HIV to take action in their own lives. “The aim is for

people with HIV to build greater resilience and confidence to be able to participate in and make choices about their healthcare,” says Cogle. Although a diverse bunch, all of the people featured in the campaign have one thing in common — they place a fundamental importance on being on the right HIV treatment. “The same treatment does not

work the same for everyone, so finding that right treatment and sticking to it is one of the most important things,” says one of the campaign’s heroes, Jose. The campaign encourages people with HIV to speak out if they feel that the treatment they’re on isn’t working for them. Abby initially started out on a multiple-drug regimen. “I’ve since moved to a one pill a day

Check out the videos on the good Quality of Life website

That’s the ethos behind a new campaign developed by the National Association of People with HIV Australia (NAPWHA). Branded ‘Good Quality of Life’ and launched in November, a crucial aspect of the nationwide campaign is that it is peer-based. “These are real positive people

CLiCk here

positiveliving l

10

l SummEr 2016-2017

regimen, which is so easily managed,” she says. “I don’t have any side effects. I just have to remember to take one pill once a day and it’s allowed me to get my viral load to undetectable. And I feel really well.” While science and medicine have advanced considerably since the early days of the epidemic, attitudes around HIV remain much the same. People living with HIV continue to be judged, shunned and shamed. Stigma and discrimination have numerous detrimental effects. Indeed, people with HIV are more likely to report anxiety or depression than the general population. With that in mind, a core theme of the campaign is for positive people to stay happy, healthy and connected. An accompanying website — goodqualityoflife.com.au — features videos in which people


staying happy, healthy and connected

The holidays can either be a lot of fun or a real drain on you physically, emotionally and financially. For people with HIV, especially those who may have have complex relationships with family, it’s important to think ahead. Here are four, simple, practical actions you can take to stay happy, healthy and connected over the Christmas and holiday season.

dAi: having

dogs gives me a structure of a day-to-day routine, which is important to stay healthy mentally and physically.

share the good things that contribute to their own quality of life. “Life is really busy and it’s important for me to retain a positive frame of mind and good health through exercise,” says Abby. “So I spend a lot of time making sure I get to the gym, whether it’s doing a yoga class or boxing. I find that maintaining a good solid exercise routine really helps me to stay well.” For Dai, it’s his dogs that contribute to his good health. “A moment I realised life was really good and happy was when I found my dogs with their chins on the bed in the morning,

1

think about who you want to see and the things you want to do

Santa isn’t the only one who should be making lists of people who are naughty and nice. You should too. Spend 10 minutes while you’re on the bus, or right after you read this article, to make a list of the people you really want to see and things you want to do over the holidays. These should be people and things that will make you feel happy, fulfilled and rested as you enter the new year. You might also want to add people and things you should avoid. making a list can help you focus, and avoid feeling pressured to do things you know won’t make you happy. making a list can also help you think through the people you don’t normally have time to see during the year, including family members. You might realise you’ve been avoiding some old friends because of fear of stigma associated with HIV. Often our fears aren’t based on reality. We can also put up walls that others sense, causing them to stay away. The holidays are a great time to reach out and reconnect.

wagging their tails, looking at me and wanting me to get up,” he says. “They seemed excited about the beginning of another day and spending awesome time with me.” Ruan maintains a good quality of life by surrounding himself with people he cares about. “But if things get really hard I like to jump on my motorbike and ride out to the countryside and have some time on my own, enjoying nature and the freedom it gives me,” he says. The website also features discussions about the many common issues facing positive people, including relating to your doctor, the importance of regular

monitoring, the importance of reaching an undetectable HIV status, how to maintain good mental health, how to maintain fulfilling relationships, and how PrEP is benefiting the positive community. Cogle hopes their stories will inspire others to reflect on their own quality of life; the things they do to maintain it, and the things they might do to make their lives better. “The campaignis built on a premise that when it comes to maintaining their own quality of lives, positive people are the experts,” says Cogle. “What could be a more uplifting and positive message than that?”

jose: hiv will affect the rest of your life, but it’s not the end of your life — it’s just the beginning of something else. positiveliving l

11

2

Connect with the community and help others

3

stay in control of your health and wellbeing

Helping others makes you feel great. It’s especially important if you live apart from family, or have complex relationships. The holiday season can magnify feelings of loneliness, which can harm your health. There are many organisations looking for volunteers over the holidays. It’s also an excellent way to make new friends and feel connected to a community. You can find volunteer opportunities here.

living with HIV is much easier these days, but it’s still a chronic disease and it’s important that you look after your mental, emotional and physical health. Sometimes going to the gym, or taking time out by yourself can get sidelined. If you are prone to the blues, keep track of how you are feeling each day, to avoid letting depression sneak up on you. It’s also easy to forget to take your meds due to hectic social schedules or travelling. The newly released app, mylife+, makes it easy to keep track of your health and wellness and has customisable pill reminders. You can store all your health information in the app, which is kept securely on your phone. Having this information can be very important if you get sick and can’t see your normal healthcare provider. download the app ahead of the holidays so you’re prepared.

4

move your life forward in 2017

As the clock strikes midnight on the 31 december, it’s normal to ruminate on the year that has just passed. Prepare in advance for those inevitable reflective thoughts. Think about and celebrate everything big and small that you have achieved this year. It’s also important to start thinking about some goals you want to achieve during 2017. Studies show that setting measurable and achievable goals is more effective than setting vague objectives. For example, instead of saying you are going to become super fit, set a measurable goal of going to the gym at least three times a week. It’s also important to write down your goals and tell friends and family.

l SummEr 2016-2017


DOCTOR LOUISE ANSWERS YOUR QUESTIONS

what’syourproblem?

Maintaining a healthy heart brian from Wagga Wagga, nsW, writes: When I was diagnosed HIV-positive in 1993, I never thought I would live to be an old man. Yet here I am! However, I understand heart disease is a problem for people with HIV as they age. Am I at risk? dr louise replies: Thank you for your query, Brian. Heart disease is indeed a bigger risk for people with HIV than the general population. Now that people living with HIV (PLHIV) are living longer, the goal of healthcare providers is to encourage PLHIV to stay healthy as they age and adopt a holistic approach to living longer with HIV. Untreated HIV has been associated with heart disease and it is recommended that people with HIV commence treatment earlier to reduce overall cardiovascular risk. There are a number of immediate lifestyle changes you can adopt to improve heart

health. Firstly, if you smoke, stop. new research suggests that cigarette smokers who are HIVpositive appear to have a higher chance of dying from smokingrelated complications (such as heart disease and stroke) than from HIV. Indeed, tobacco is the leading killer among positive smokers on antiretroviral treatment. Secondly, exercise — particularly cardio exercise such as running, swimming and cycling. Ideally, you need to be moving fast enough to increase your heart rate. Strength training is also good for the heart; try yoga or weights. Aim for at least 30

minutes of moderate-intensity activity five days a week. Stress can increase blood pressure and raise stress hormones; if you’re feeling under mental pressure consider meditation or mindfulness exercises. Next up is diet. Eat a variety of fruits and vegetables — the wider the colour spectrum the better. A common risk factor for heart disease is having unhealthy levels

of blood fats — lipids, such as cholesterol and triglycerides. Eat plant-based fats (such as nuts) as opposed to animal fats (butter, cheese etc). Reducing the intake of processed food is advisable as they often contain hidden sugar and salt. Eating healthily and exercising regularly will help control your blood pressure. However, there are some risk factors you can’t control such as gender and age (men are generally at higher risk of heart disease than women — and from an earlier age). There is also a genetic risk. If there is a history of heart disease in your family, the more likely you will be at risk too.

To recap, many factors contribute to heart disease — some more serious than others. Smoking substantially raises the risk of heart disease. Piling on the pounds also might increase the risk. But the good news is with behavioural changes, alongside regular monitoring, the risk of heart disease can be substantially lowered. Keep your questions under 100 words and email them to pl@napwha.org.au. l dr louise Owen has been working as a sexual health physician in the HIV sector since 1993. Previously a director of VAC’s Centre Clinic in melbourne, she is currently the director of the Statewide Sexual Health Services in Tasmania. Her advice is not meant to replace or refute that given by your own health practitioner, who is best placed to deal with your individual medical circumstances.

THEPILLBOX prezcobix is a two-drug combination regimen fusing darunavir (brand name prezista) with cobicistat (tybost). Darunavir belongs to a class of drugs called protease inhibitors. Protease inhibitors (or PIs) used to be the HIV drugs with the highest pill burden and the most side effects — but not any longer. PIs stop HIV from multiplying. Cobicistat, meanwhile, is a booster drug that increases the effectiveness of HIV medicines. In a clinical study, 70 percent of adults maintained an undetectable viral load (rendering them un-infectious) with a darunavir-based HIV regimen. Prezcobix is useful for adults with HIV new to treatment and those who haven’t developed resistance to darunavir. Prezcobix must be combined

Presenting Prezcobix with at least two other HIV treatments (usually nucleoside analogues, or ‘nukes’, which help prevent the CD4 cells from producing new HIV). Dosing is one tablet once a day to be taken with food, with each pink pill consisting of 800mg of darunavir and 150mg of cobicistat. Although generally welltolerated, common side effects of Prezcobix include diarrhoea, nausea, vomiting, headache and abdominal pain. Skin rash is another common side effect, although Prezcobix’s manufacturer, Janssen, reports the rash to be “mostly mild-to-

moderate”, and often only occurring within the first four weeks of commencing treatment before resolving over time. (If, however, the rash is severe it’s recommended that you contact your healthcare provider immediately.) As well, Prezcobix may cause liver problems. As a result, liver function tests will be carried out before and during treatment. People with HIV coinfected with

positiveliving l

12

hepatitis B and hepatitis C have an increased chance of developing liver problems so liver function will be monitored more regularly. Kidney injury can also sometimes occur or grow worse when Prezcobix is taken with other medicines. There is also a risk of diabetes or worsening diabetes, and high blood sugar. Increased levels of insulin have also been noted, as have changes

l SummEr 2016-2017

in body fat (fat wasting and fat gain). As a booster agent, the cobicistat component increases the levels of other drugs in the body, which may increase the risk of serious side effects — always be sure to inform your healthcare provider of any other medications you may be taking (including prescription and over-the-counter medicines, vitamin supplements and herbal remedies). Prezcobix should not be used during pregnancy as its safety on that population has not been studied. Janssen also advises that caution should be taken “in the administration and monitoring of Prezcobix in elderly patients”. In short: Prezcobix lowers pill burden, which eases adherence, and has less toxicity and higher tolerability than older PIs.


newsouthwalesnews PositiveLifeNSW

Young, straight and positive? as a heterosexual man with HiV and positive for nearly 17 years (eight of these while in sydney), i am here to tell you there are heterosexual people living with HiV in nsW! While statistically there are more gay men living with HIV in Sydney than positive straight people, the transmission of the virus isn’t based on your sexuality: HIV affects gays and straights alike. In late 2015, I started to help run a social club for heterosexual people through Positive life NSW. It was lovely to meet other people like myself living with HIV and to hear real-life stories and experiences. As the group grew and more people became involved, I realised that most were mature people over 40 years of age. A few older members at the

social club mentioned that young people participate once or twice and then stop coming. I wondered why? Where are young people finding social contact and support from their peers? I started to wonder how many young heterosexual people would be living in Sydney. I wanted to find friends like myself to hang out with on a Friday or a Saturday night who understand and connect with my experiences. Of course most of us have friends, but not many we can freely talk with about our HIV.

Questions such as “Which medical centre do you go to?”, “What meds are you taking?” or “How have you found the new medication?” These are all questions I’d like to find out from others in my age group while we’re sitting around at the

pub or over a dinner just like any other young adult. most of the young people living with HIV who I’ve spoken with have this huge thought in their mind: “Oh my God! I am going to be alone the rest of my life!” I feel young heterosexual people living with HIV are among the most isolated in the positive community. Although HIV is no longer a life-threatening disease and people are living longer and healthier with the new medications, HIV can still be pretty scary when you’re young.

While I admire the leadership and organisation of gay men with HIV and their ability to find friends and networks, I’d love to see a strong community of young heterosexual boys and girls with HIV as well. If you know anyone who is young, heterosexual and lives with HIV let them know about our under35s group. If we build a community of friends together, who understand and are there for each other, we can support and look out for each other. And yes, there are young heterosexuals living with HIV here in Sydney! — PT l For more about the under-35s

social group, contact Positive life NSW on (02) 9206 2177 and ask for PT. This article was previously published in Sx 824.

Housing support for poz people Finding and keeping accommodation for people living with HiV (plHiV) is a critical factor in maintaining health — both mentally and physically. While most PlHIV are doing really well, some people struggle to maintain employment and rely on social or public housing for affordable accommodation. When people struggle to find accommodation, maintain a tenancy or are at risk of homelessness, they experience serious threats to their health.

Positive life has a Housing Support Officer to offer advocacy and support to PlHIV in metropolitan and regional NSW. We aim to assist people in navigating and negotiating the accommodation and housing maze. If you’re living in public housing, you might not be facing homelessness or a similar crisis, but you might be having some difficulty working out who you need to contact to manage simple maintenance issues such as broken windows, leaks or

utility repairs. You could need modifications to your accommodation to keep you safe in your home and get around more easily; you may need someone to support you to confront homophobia or other antisocial behaviour from

positive life’s Housing support officer, cameron darling

Talkabout Online ‘Where we speak for ourselves’ is an online magazine for and by people living with HIV. If you are living with HIV in NSW and are interested in being an author in Talkabout, click here or call the Editor on 9206 2179 EmAIl editor@positivelife.org.au l read Talkabout online here

neighbours that affect your peace of mind and sense of security. Problems with memory may make it difficult to complete complex paperwork and as a result you may miss deadlines that

many housing providers ask you to meet. l If you need support to find

accommodation or know of someone who may need assistance, complete a housing application or transfer, attend a tribunal hearing or any other housing matter, you can call the Housing Support Officer at Positive life on (02) 9206 2177 or email Cameron at camerond@positivelife.org.au

Life.mail

Subscribe to Life.mail! Positive Life’s electronic bulletin will keep you in the loop with all our news, events and opportunities delivered direct to your inbox! Subscribe here

PositiveLifeNSW 414 Elizabeth Street Surry Hills 2010 | ) (02) 9206 2177 or 1800 245 677 | w positivelife.org.au positiveliving l

13

l SummEr 2016-2017


victorianews

Stand tall with ENUF living positive Victoria’s enuF campaign has called upon its family of ambassadors from around the world to give the campaign its latest voice against HiV stigma and discrimination. ENuF has almost 60 community leaders and influencers who have lent their voice to battle against the stigma and discrimination that continues to alienate people living with HIV. This series of new messages from the new campaign launches in conjunction with this year’s World AIdS day. ENuF ambassador Professor dennis Altman (pictured at right) recognises World AIdS day as “a moment to reflect on those we’ve lost to AIdS, to support those who are living with the virus, to congratulate the activists who are leading the

fight to end this epidemic, and, above all, to look beyond our relatively privileged situation in Australia and reach out to those millions of people in countries where the most basic respect for human rights and access to information, care and support is denied in the name of culture, religion and tradition.” underlying all of this is a need to place the damaging effects of stigma at the top of our minds. “Fighting against HIV stigma remains one of the crucial prerequisites for turning the HIV epidemic around. A fight everyone needs to join,” says ENuF ambassador dr Jürgen

local activists, l I pledge to challenge journalists and HIV stigma whenever and writers Paul wherever I see it. Kidd and Nic l I will not sit by and Holas have also allow anyone living with HIV to joined the fear disclosure. chorus of l I will take action wh ambassadors to en I see others gossiping about, give weight to rejecting and/or promotin the fight against g negative stereotypes abo stigma and ut people living with HIV. discrimination. l I commit to being par “Some people t of the solution, not part of the think resilience is problem. like armour, deflecting the slings and arrows of stigma,” said Nic Holas. rockstroh, “However, armour is something Professor you need to put on every day — of medicine it's heavy and can weigh you and Head of the down. my hope is that people HIV Outpatient Clinic at the living with HIV work together to university of Bonn in Germany. develop a type of resilience that

THE ENUF PLEDGE

works more like a force field, an energy that comes from within.” To further inspire resilience, Paul Kidd said: “living with HIV isn’t always easy, but by connecting with the PlHIV community you connect with a global network of passionate educators, carers and activists who are united in opposing stigma and discrimination, standing up for the rights of people living with HIV, and ending the epidemic. We stand on the shoulders of giants.” ENuF will take these and many more messages to the public through posters, postcards, and web and social media streaming throughout the summer, whilst recruiting more people to the fight against stigma and discrimination. You can add your voice by signing the enuF pledge.

Vic’s positive community at heart of the HIV response the engagement of people living with HiV (plHiV) continues to be vital to the HiV response; such community involvement acknowledges the diverse and evolving experiences of living with HiV. The Victorian AIdS Council (VAC) recently released a report — the meaningful Involvement of People living with and Affected by HIV (mIPA) — which documents the work of the organisation over the past 18 months. “People living with and affected by HIV are a key source of strength for the organisation as we continue our commitment

to developing and delivering services by our communities for our communities,” said Simon ruth, VAC’s CEO (pictured). “With current developments in HIV treatment and prevention, we can now see a future when HIV transmissions move close to zero. We will not achieve this without our community members who live with HIV continuing to be central at all levels of our work — leadership, planning, development and service delivery.” The two guiding principles used were: advocating for the meaningful involvement of PlHIV and affected

l

simon ruth

communities in all aspects of the HIV response; and fostering active and meaningful

involvement of PlHIV and affected communities in all activities. The audit showed that VAC has demonstrated a commitment to mIPA principles in several ways including: l Engaging PlHIV as presenters in community forums, events

and in training for staff and volunteers; l recruiting PlHIV in positions for the board of directors, staff and volunteer positions; l Being a founding partner and major supporter of the Positive leadership development Institute (PldI) and using the graduates in peer-support programs including re-wired 2.0, which supports gay men who use methamphetamines. The action plan will continue to run until 2018. For full details of the report and to track the organisation’s progress, visit Vac.

living positive victoria | Suite 1, 111 Coventry Street Southbank 3006 | )03 9863 8733 | w livingpositivevictoria.org.au

positiveliving l

14 l SummEr 2016-2017


queenslandnews

When times are tough Qpp treatment support Facilitators (tsF) are trained to assist plHiV who may be experiencing issues and circumstances impacting their treatment and care. Having welcomed a new staff member in Brisbane, we now have a full complement of people providing support to clients from our offices in Brisbane, Cairns, mackay, Sunshine Coast and Beenleigh. Our team also conducts regular outreach visits to the regions of Toowoomba, Gold Coast, Wide Bay, rockhampton, Townsville and mt Isa. Team members are able to visit people in their homes, at QPP offices, or make contact via Skype, email or on the phone. They are there to help when PlHIV reach a point in life when

things appear overwhelming. TSF support can assist to untangle what is going on, help people to draw on their existing strengths — and help to make change happen. Once issues have been resolved, people often return to managing their life without the need for support. Team members are solutionfocused, with knowledge of community and other supports available; they’re able to maintain and utilise pathways for supporting clients to access specialised assistance when needed. TSFs work from the client’s perspective of what they would like help with. l For more information about

Treatment Support call 1800 636 241 or email referrals@qpp.org.au.

Empowering positive people the HiV peer navigation program (pnp) supports people newly diagnosed with HiV to navigate the complex environment of HiV treatment and care. It’s based on the philosophy of empowerment and selfdetermination, and supports people living with HIV (PlHIV) to make informed choices about their health and wellbeing. The role of Peer Navigators is multi-faceted: it includes emotional/social support around diagnosis; practical support to overcome barriers to accessing HIV treatment and care; and educational support to better

Accessing dental services readers may recall the closure of the commonwealth chronic conditions dental scheme (ccds) at the end of 2012. The scheme allowed PlHIV to obtain subsidised dental and orthodontic oral healthcare at private dental clinics. Now only those people with a concession card, healthcare card or lowincome card may access public oral health services — for emergency and routine dental care only. Although public oral health services are free to eligible individuals, they do not include advanced orthodontic care (such as crowns, bridges, braces, veneers, implants, etc). Consequently, QPP has produced a factsheet to assist

and guide eligible people (with a relevant concession card) to access Queensland-based public oral health services. The resource also provides information for PlHIV ineligible for public oral health services (and who do not hold a concession card) on how to access dental care. The resource highlights a number of options for improving dental care access, including factoring dental costs into a regular budget or through a private healthcare fund. Additionally, some private dental practices offer interest-free payment plans, and some

university dental schools may provide free or discounted dental treatment when provided by students in supervised clinics. The factsheet also discusses disclosure of HIV to dental services. QPP is also able to offer referral information to dental professionals who are HIV knowledgeable, supportive and welcoming. l View and download the fact

sheet here. l For those seeking information about how to care for their dental and oral health, Positive life NSW has produced an excellent guide for PlHIV.

understand HIV and other medical information. Since the program launched in August, the team has grown to 16 Peer Navigators located across the state. Over the past four months, we have engaged with 45 clients — either newly diagnosed or needing help to

engage in care. The PNP is a pilot, with university of Queensland (uQ) conducting an evaluation of the program to measure and better understand the role of peer navigation in improving linkage to care. This research began collecting data midNovember, with preliminary results from surveys and qualitative interviews expected mid-2017. The program is continuing to grow and there are vacancies for more Peer Navigators in Brisbane and regional locations. If you’re interested in joining the team, contact Jamie Perks on 1800 636 241.

PrEP study now recruiting 0n 7 november 2016, the Queensland Minister for Health, the Hon. cameron dick, announced the commencement of the Queensland prep study, Qprepd. The study will provide PrEP for up to 2,000 Queenslanders. This marks a significant milestone for Queensland to expand HIV prevention services. The trial is an initiative of the Cairns and Hinterland Hospital and Health Service, Queensland Health, university of Queensland’s School of Public Health, and the Queensland

AIdS Council; it involves 21 study locations throughout the state. most sites are recruiting now, with all locations expected to be open by early 2017. Those interested in participating in this study should contact their local clinic directly to enquire about availability of appointments as well as billing practices (bulk billing or fee). While the medication for QPrEPd participants will be free, some clinics do charge private fees for consultations. Further info here.

queensland positive people | 21 Manilla Street East Brisbane 4169 | )07 3013 5555 or 1800 636 241 | w qpp.net.au positiveliving l

15

l SummEr 2016-2017


POSITIVE VOICES POSITIVE PEOPLE SHARE THEIR POSITIVE EXPERIENCES OF LIVING WITH HIV

ROBBIE KHADIJAH BOB

i was 21 when i was given my HiV diagnosis. at the beginning i felt so low. i felt i had no confidence. i felt i was dirty, unclean — polluted. i also allowed others to think that of me. after a few months of living with HiV i told myself that i’m not a bad person so why am i allowing these thoughts and why am i allowing others to think that about me? so what i did was i created a new normal. i went back to being the fun, carefree, confident robbie who now has this amazing life perspective thanks to HiV. i will never ever allow myself to be treated or seen as less. because i’m not. no one with HiV is.

MALINA

regardless of your diagnosis, it doesn’t change who you are. it doesn’t make you worse or less of a person. if anything, i learned that HiV made me strong — i didn’t realise how strong i was. and you know what? i’m oK. don’t let a diagnosis determine your life. i’m living proof that, regardless, you can still live fabulously — and be you. don’t let anybody tear you down.

positive. What does it mean to me? it means amazing. passionate. powerful. loving. Kind. a smile. laughter. Joy. a mother. a father. a son. a daughter. a person. a person who has faith. a person who is only human. Who breathes, just like everyone else. a person like you. let’s take out ‘HiV’ from HiVpositive. you are beautiful and perfect in every single way. you are positive.

CHARLIE

HiV — unlike any other condition — all the flak that we get really comes from a moralistic place where people can blame it on you for being a slut or put you in a box and make you feel shitty about yourself. it took me a long time to work through these feelings of inadequacy; these feelings that i was never going to be loved and to realise that that sort of stigma and bullshit is totally unacceptable and actually has no bearing as to who you are as a person. i, like you, and every other HiVpositive person is as strong, wonderful, phenomenal, powerful, interesting, sexy and amazing as they have always been — and HiV doesn’t change that at all.

positiveliving l

16

l SummEr 2016-2017

i’ve been poz for 23 years. so i’m a long-term survivor and i’m kind of proud of that. and i’m proud of all the long-term survivors out there. i want to lift my hat off to you. i also want to lift my hat off to people who have joined us along the way and offer encouragement, support and love. We are part of a community. We are here for each other, we’re here to support each other and to learn from each other — and i kind of like that. it’s an opportunity that comes with HiV and i’ve grabbed it. and i hope you will too: to enjoy being part of a community that can offer you so much and for you to offer so much. be well. enjoy your life. enjoy the HiV community — it’s quite wonderful.

JOSHUA

this year will mark ten years that HiV has been living with me. as you noticed, i didn’t say i was living with it. these three letters changed my life and i refuse to allow it to hold me down. i refuse to allow it to depress me or hold me captive. i refuse to let it hold me in bondage. i choose to be strong, i choose to be courageous. My positive message to you is to stand up and stand out. Make a difference by giving back, make a difference by serving; make a difference by taking care of yourself. you can do whatever you put your mind to as long as you just try.


A social media campaign — RiseUpToHIV — invited PLHIV from all over the world to post video messages on Facebook so as to encourage, educate and empower people newly diagnosed. Here are transcripted snippets of some of the contributions.

LEXIE

i don’t have any issues with HiV because i’ve accepted it. and i know, no matter what, everything is going to be oK. i have two options: choose to be sad about it, or be proactive and positive. i’d rather be happy so i educated myself, which creates confidence. i don’t care what people think. i know the truth about HiV. i know i can live. i know i can have kids without them contracting [HiV]. i know i can be in a relationship and have all the sex i want. i choose to live a normal life — my life is normal. i just have a manageable virus that i take meds for. that’s all.

JOEE

i was diagnosed HiV in March 1990, three months shy of my 21st birthday. When i went to see my doctor he gave me five years to live. i gave up all my dreams and hopes — and the will to live. but, fortunately, here i am 26 years later. i’m very healthy. so my message to you guys is to never give up and to keep up the fight.

mOrE AT

riseuptoHiV

BRUCE

this is an incredibly exciting time to be living with HiV because we know now that we have treatment that not only protects our health and enables us to live long and healthy lives, but it also protects our partners from getting HiV. We cannot transmit HiV when we’re undetectable. so the message is, if you’re considering treatment or if you’re on treatment, please understand that if you take your meds and stay undetectable you won’t transmit HiV and you’ll stay uninfectious. We can have sex and intimacy, and babies with our partners without fear and without shame and without stigma.

DEE

it’s oK to be diagnosed with HiV. i’ve been living with HiV for 19 years — i was diagnosed in 1997. Hey, i even had a baby. she’s 15 and she is not living with HiV. so it’s oK — have faith. Wake up every day with a smile; give yourself hope. Give yourself positive reinforcement every day because you’re alive! it’s a beautiful thing. remember: you can live with this virus; it’s not as bad as you think it is. i promise you.

ANDREW ALEX ALEX

in 2013 i was diagnosed HiV, which for me, to be honest, was an inconvenience and an annoyance more than anything. i knew HiV wasn’t a death sentence anymore and that people living with it can live a long, healthy life. i came to the conclusion that i could let three letters rule my life or i would rule it. so i began a not-for-profit organisation that provides peer support for people in rural areas. For me, that was my way of taking back power and doing something for myself. Going through [the HiV diagnosis] has given me the confidence in life to do things that i never, ever thought i would. Far from being the end, being diagnosed HiV was the beginning. life means more now than it ever did.

positiveliving l

17

l SummEr 2016-2017

i was diagnosed in 2009 and initially i went through concerns about my future health, my future career; i was worried whether i would find a relationship or not. and i was worried about what my friends and family might think. i soon started on medication and they were working well. i realised that my health hadn’t suffered at all from my diagnosis. i started to tell my friends; i told my family. i met my boyfriend and, basically, i started to live a normal life. i decided i wanted to be open about my status and make people realise what it actually means to be living with HiV: that you’re just a normal person who lives next door. you can live all your hopes, and all your dreams. it doesn’t change you as a person.


THE

backpage

A berry Christmas FOR A HEALTHY SUMMER 1 Slip, slop, slap: use a highrange suncream lotion (30+) so as to protect your skin from harmful UV rays and be sure to reapply every 3-4 hours.

2 Glug, glug, glug: so as not to dehydrate in the heat, make sure to drink plenty of water (at least eight to nine glasses a day).

3 Too hot for a run? Dive in

the pool. Swimming helps maintain a healthy weight, a healthy heart and lungs. It also tones muscles and builds strength.

4 Get gardening. Immersing

your hands in dirt is grounding and an excellent stress suppressor.

5 Get out the house. Whether it’s hiking, cycling or hover boarding, summer is the perfect excuse to jump off the couch and leap into the great outdoors.

summer’s here, which means berry season. and when it comes to super foods, berries are number one. Whether fresh, frozen, freeze-dried, powdered or juiced, berries are among the healthiest foods on the planet. What makes berries so super are the naturally occurring nutrients that help protect cells from free-radical damage. the darker the berry, the greater the health benefits. berries are said to help prevent chronic disease and are second only to spices in relation to the level of antioxidants they contain. berries are also good for the heart and lower blood pressure. due to their melatonin content, berries can improve quality of sleep. as well, they’re good for the eyes and the bones. berries also reduce dna damage, which protects against ageing. in short, berries are the best.

The heat is on!

there are more than 200 varieties of chilli in a variety of colours — from yellow to green to red to black. their heat scale can range from mild to Vesuvius. it is the compound capsaicin that gives chillies their fiery flavour. a relative of the tomato, chillies have high levels of vitamins (particularly vitamin c — seven times more than an orange). chillies contain a host of other ingredients that are disease preventing and health promoting. they are said to improve heart health, boost circulation and thin blood. chillies provide pain relief and reduce inflammation. they can act as a therapeutic and a relaxant while helping clear congestion and burn fat. chillies also have a beneficial effect on people who are overweight or who are diabetic as they reduce insulin levels. in short, chillies are, er, cool. positiveliving l

18

l SummEr 2016-2017

QUOTEUNQUOTE

HIV is not a gay disease; this is a disease plaguing women. And I just want to clarify that. Women aren’t getting tested . . . the more that we can educate people the more that we can control HIV. I think [the fight against HIV] is a very important fight to join. Lady Gaga

GOFIGURE q

In 2015, there were an estimated

17.8 million women worldwide living with HIV, or 51% of all adults with HIV.

Positive Living Summer 2016-2017