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positiveliving FOR PEOPLE LIVING WITH AND AFFECTED BY HIV | AUTUMN 2017

I refuse to have some HIV evangelist preach to me the gospel of disclosure. I have chosen the disclosure path for the last 15 years. It is the right thing to do for me. Why should I tell some random online something intensely personal about my life?

I’m positive and I don't care who knows it.

We shouldn’t force others to come out unless — and until — they’re ready to do so.

I feel most empowered when I’m supported, rather than made to feel I'm a bad person when I don’t disclose.

We need everyone to come out if we’re to end stigma.

d l u o h S ? l l e t u yo


“I know in my heart and soul that I will not be the only one cured of AIDS.” TIMOTHY RAY BROWN

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National Day of Women Living with HIV THURSDAY MARCH 9

For positive people living in more remote parts of Australia things are not as easy as they are for city people

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11 ISSN 1033-1788 EdITOr Christopher Kelly

david menadue Vicky Fisher CONTrIBuTOrS rebecca Benson, dominic Brookes, david menadue, miranda Smith dESIGN Stevie Bee design ASSOCIATE EdITOr PrOOFrEAdEr

COVEr ImAGE xx

Eggplant & figs

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Engineered T-cells show promise

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IT’S ALL ABOUT PURPLE

LIVING IN THE BACK OF BEYOND8-9

THREE DECADES AGO, JOURNALIST RANDY SHILTS WROTE A BESTSELLING BOOK THAT WOULD FORCE AMERICA TO TAKE ACTION AGAINST AIDS.

positiveliving

HIVCURE

WHAT TO ASK YOUR DOCTOR FOR WHEN YOU’RE POSITIVE AND 60

The latest on PrEP “People are needlessly getting HIV while we wait for access to this prevention pill.”

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GUT10

The

HIV+THE BODY

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: June 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.

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thenews

Jillian skinner

HIV champion retires outgoing nsW health minister Jillian skinner has received widespread praise from HiV organisations for her unstinting work in the fight to end HiV. A state politician for the past 20 years, Skinner has played an important and active role in helping to implement new advances in HIV prevention. Describing Skinner as “an incredible ally for people and communities affected by HIV”, ACON CEO Nicolas Parkhill said: “The development and implementation of NSW’s ambitious strategy for ending HIV transmission by 2020 was driven

by Minister Skinner and the success that the strategy is moving towards will be an important and lasting legacy.” Making PrEP accessible through the EPIC-NSW trial, and the introduction of community rapid-testing facilities are just some of the key initiatives that Skinner is credited for having championed. “Minister Skinner’s keen approach of the power of community-driven health responses has allowed community organisations to be bold and innovative in our approaches to HIV prevention and support,” said Parkhill.

Wa gets prep people at risk of HiV in Western australia will soon have access to prep. A trial coordinated by the WA AIDS Council (WAAC) and Perth’s M Clinic aims to be underway by 1 July, if not earlier. The trial will be open to 2,000 participants and receive funding of $1.3 million over two years. WAAC CEO Andrew Burry said he was “thrilled” that funding had been secured and announced. “We have been working hard for this for a long time. In the end, the outcome was greater than we dared dream. [The project] is the largest in the country on a per

capita basis.” Whilst funding is in the can, there is still some work remaining before enrolments can commence. In the interim, a preregistration program will be established. For more information, anyone interested should email prep@waaids.com. As well, Victoria’s Alfred Health will partner with the South Australian Health and Medical Research Institute (SAHMRI), SA Health and local clinics to provide people at risk of HIV in SA access to a study which will expand the use of PrEP. (For more on PrEP see page 10.)

remember to like us at facebook.com/positivelivingmag and receive all the latest HiV news.

Queensland leads the way Queensland is punching way above its weight in the fight against HiV. Over the past two years, the Sunshine State recorded a 38 percent drop in new notifications — largely among gay men. However, that decrease is accompanied by an increase in other STIs such as gonorrhoea (up 68 percent) and syphilis (up 100 percent). “That tells us gay men are still having sex, they’re still getting STDs,” said Dr Darren Russell of HIV Foundation Queensland (pictured). “But something is working to be not finding as much HIV.” That “something”, according to experts, appears to be a combination of PrEP, TasP and increased testing. (See more page 14.) Meanwhile, Queensland is to

new HiV notifications are down 38 percent — largely among gay men. receive a $5.7 million healthfunding boost to go towards statewide sexual health education, health services, and to add much-needed skills and

resources to the sector. Announcing the cash injection, Queensland health minister Cameron Dick spoke of the challenges facing the state: “Including rising rates of some STIs, issues relating to reproductive health, increasing numbers of people living with HIV, and the discrimination and stigmatisation that is often associated with sexual healthrelated matters,” he said. The funding follows news that the Queensland AIDS Council’s Indigenous sexual health program is to close after a cut in funding. The initiative will end in three months, despite STI rates up to 20 times higher among Indigenous people than in the general population.

rural program for Tassie PlHIV

a new program is to launch offering support to people in north and northwest tasmania living with HiV. Facilitated by the Tasmanian Council on AIDS, Hepatitis and Related Diseases (TasCAHRD), the project’s aim is to create linkages for people living with HIV so that they can provide peer support for one another. “Although we are a statewide organisation and undertake regional visits there is much more ongoing need than we can provide,” TasCAHRD CEO Sabine

Wagner said. William is HIV-positive and lives in Launceston. “There has been little or no peer support in northern Tasmania for some time,” he told PL. “When it comes to peer support, I have developed

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friendship networks with HIVpositive people in Hobart.” TasCAHRD’s project will look to develop an education network and provide training for organisations in rural communities to better service people living with, or who are at risk of, HIV. The 12-month initiative will commence in March or April following recruitment of a staff member; Wagner said TasCAHRD would seek further funding if there was great need for longer-term support. (See pages 8-9.)

mOrE NEWS AT pl online


thenews

aust. treatment breakthrough Headlines from croi When science, community and political will come together, we can end the epidemic, says new York commissioner. new HcV infections among gay men with HiV drop by half after daa roll-out in netherlands. integrase inhibitor bictegravir matches dolutegravir for first-line HiV treatment. spanish vaccine induces viral control of art in nearly 40% of recipients. unique case of prep failure without drug resistance reported from amsterdam. sti rates in prep users very high, but evidence that prep increases them is inconclusive. experimental sti prophylaxis in prep users produces big drops in syphilis and chlamydia but not in gonorrhoea. better depression care could improve outcomes for HiV treatment programs. accelerated linkage to care improves retention in care by a third. stopping smoking cuts the risk of some cancers quickly in people with HiV. mOrE NEWS AT pl online

in what is described as a “major breakthrough”, scientists in Geelong, Victoria have discovered a protein that could be crucial in preventing HiV. The protein — called interferon epsilon and found in a woman’s reproductive tract — has the potential to obstruct the virus duplicating in the body’s immune cells. Discovered three years ago, the

protein protects women from getting infections. “It acts as a moderator, a regulator for the human immune system,” said Professor Johnson Mak (pictured) from Deakin University’s School of

Medicine. “This protein can actually facilitate or induce our bodies’ immune system to block off HIV at multiple different steps.” It is hoped that the discovery

MOTHER-TO-CHILD TRANSMISSION

Thailand’s success thailand has become the first asian country to eliminate mother-to-child transmission (Mtct) of HiV, reducing rates to just 1.9 percent in 2015. Success has been achieved through a multi-sector response backed by determined political commitment and substantial government investment. Thailand’s response followed a strategy recommended by the World Health Organisation (WHO) that focuses on four pillars of implementation: primary prevention of HIV in women of childbearing age; prevention of unintended pregnancies in women living with HIV; prevention of HIV transmission from an HIV-

infected mother to her infant; and provision of appropriate treatment, care and support to women and children living with HIV. Other initiatives, such as the promotion of 100 percent condom use by male clients of sex workers, are also credited with Thailand’s achievement. “Thailand has achieved WHO elimination of MTCT targets with early and concerted efforts of all sectors of Thai society,” said Professor Usa

Thisyakorn of Bangkok’s Chulalongkorn University. “Since the children are the country’s future, how the country responds to the problems created for them indicates how highly the country values its future.”

no more pill time? could an end be in sight for daily drug regimens to treat HiV? That’s the hope of researchers at the forefront of a new vaccine therapy that has seen five people control and suppress the virus to undetectable levels without the need of antiretroviral treatment (ART). While researchers acknowledge it is early days, they’ve been keen to release news of one participant who has been undetectable while drug-free for seven months. The other four have been drug- and detectable

virus-free for six, 14, 19 and 21 weeks respectively. All participants were given a booster dose of one of the vaccines, followed by three doses of romidepsin — a cancer drug that has potential to flush HIV out of hiding. After a final vaccine booster, people then stopped taking ART. While the news is

promising, excitement should be tempered, cautions Beatriz Mothe of the IrsiCaixa AIDS Research Institute in Barcelona, Spain. After all, treatments have appeared to ‘cure’ people of HIV before, only for the virus to reappear further down the track. Still, Mothe is willing to concede this time might be different. There’s a long way to go, she says, “but we’re on the right path”.

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will lead to alternative HIV prevention strategies for women, such as a gel or microbicide that would increase the levels of the naturally occurring protein. It is, however, early days. “We still have a lot more work to do,” said Professor Mak. “In many ways we want to better appreciate how the protein works, how to handle it, how to reproduce it and how to make it more potent.”

calls to fast-track self-test

HiV organisations have called on the therapeutic Goods administration to fast-track the approval of diY HiV test kits. Although the federal government lifted the ban on home-testing kits in July 2014, manufacturers still need approval from the TGA to be able to sell the devices in Australia. “We have this opportunity to dramatically change the HIV epidemic,” said Australian Federation of AIDS Organisations President Bridget Haire. “We may be able to end new HIV infections in Australia. But that’s a matter not just of treatment and prevention; it’s also that we We may be need to currently able to end find out who has HIV in order to new HiV end the infections in epidemic. Testing is australia. absolutely testing is critical to that. We need to absolutely deliver testing to critical to that. people in all of the different ways that they want to access it.” HIV advocates have long been calling for the widespread availability of self-tests in Australia. Currently, around 3,350 of the 27,150 people living with HIV in Australia are unaware they are positive.


thenews

Cakes, candles and a wish for a cure for all it might strike you as odd that someone would celebrate being HiV free. perhaps more understandable though if that person had once been diagnosed HiV-positive. To date, Timothy Ray Brown (aka the Berlin Patient) is the only person to have been cured of HIV. Before blowing out candles on a specially made cake, Brown said, “It happened, and it was a hard survival. But I’m here.” Around him a group of researchers, activists and people living with HIV cheered. The celebration was held in Seattle at the annual Conference on Retroviruses and Opportunistic Infections. Unable to attend the

conference, Gero Hütter, the German doctor who cured Brown, sent a videotaped message explaining the significance of the event. “Timothy’s case, as a proof of principal, has changed a lot in the field of HIV research,” said Hütter. “Timothy is the motivation for hundreds of researchers and activists to go forward to the big target that HIV/AIDS can be cured.” Brown was diagnosed HIVpositive in Berlin in 1995. A year later, with the arrival of antiretroviral therapy, he commenced treatment. Then, in 2006 Brown was diagnosed with leukaemia. After chemotherapy failed, Dr Hütter suggested a stem

timothy ray brown celebrates ten years free of HiV cell transplant. Hoping to kill two birds with one stone, Hütter used a donor who was naturally

resistant to HIV. The procedure very nearly didn’t happen, with Brown initially refusing to be a

“guinea pig” for what would be a world-first operation. In the event, the transplant went ahead on 7 February 2007. Brown stopped taking HIV treatment on the same day; three months later the virus was no longer found in his blood. Ten years on, Brown’s case continues to inspire cure research. As for the man himself, he has embraced his role as a symbol of hope, and the search for a universal cure has become a life-long mission. “I know in my heart and soul that I will not be the only one cured of AIDS,” said Brown. “We are committed to helping end this dreaded disease once and for all.”

“i know in my heart and soul that i will not be the only one cured of aids.” As Miranda Smith reports, T-cells that target HIV but are resistant to HIV infection are the latest strategy in the battle against HIV.

HIVCURE

Engineered T-cells show promise chimeric antigen receptor (car)-t-cells are a concept in development for treating cancer. seattle researchers have published a new approach for developing car-t-cells. this new strategy could eventually lead to better outcomes for people living with HiV. WHat is a car-t cell? T-cell receptors help trigger immune responses. T-cell receptors are found on the surface of T-cells, extending inside the cell to signal to other molecules. CAR-T-cells have an engineered T-cell receptor. In a CAR-T-cell, the outer and inner segments of the receptor come from different molecules. WHY deVelop tHis approacH For HiV? Antiretroviral drugs don’t completely get rid of HIV infection. Natural immune responses are also not able to

clear lingering virus. CAR-T-cells might be able to do what regular T-cells can’t — kill HIVinfected cells remaining in the body during therapy. This is because CAR-T-cells recognise a broad range of HIV-infected cells, are potent and may be less affected by the blocks limiting regular T-cells. CAR-T-cells have already been developed and tested in people living with HIV. Clinical trials of first-generation CAR-T-cells showed that the cells stay in the body for more than ten years, but do not reduce the amount of virus. WHat’s diFFerent tHis tiMe? In the recent study, the outer segment of the T-cell receptor included parts of broadly

of the CCR5 gene. The engineered cells specifically targeted HIV-infected cells, and were resistant to HIV infection. WHat exactlY did tHe researcHers do? First, the researchers created CAR-T-cells from healthy human Tan engineered cells using five different t- cell for bNAbs. The researchers cancer therapy then tested the cells in a range of experiments. The CAR-T-cells became activated neutralising antibodies (bNAbs), in the presence of HIV-infected which effectively target multiple cells, and could kill HIV-infected HIV strains. The researchers used cells. an inner segment of the T-cell Secondly, the researchers receptor from normal T-cells, selected the most potent CAR-T with co-stimulatory components variant (PGT145-CAR) to test that weren’t included in the firstCCR5 disruption. Similar to the gen CAR-T-cells. The researchers first lot of CAR-T-cells, the CCR5made the CAR-T-cells resistant to edited CAR-T-cells were activated HIV infection by directing the Tand could kill HIV-infected cells. cell receptor genes to the middle

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In addition, the CCR5-edited CAR-T-cells were better at dealing with active virus replication. WHat does tHis all Mean? This work shows the potential for engineered T-cells based on broadly neutralising antibodies that are themselves resistant to HIV infection. These cells are specifically switched on when they encounter HIV antigens. They are able to kill HIV-infected cells even when there is a lot of HIV around because they don’t get infected and can maintain their potent function. This work is still at an early stage. All of the experiments in this study were done in laboratory models of disease. The CCR5edited CAR-T-cells haven’t been tested in humans yet. Recent funding announcements suggest that there is a lot of preclinical exploration of this promising strategy to come.

l For more cure news, visit hivcure.


newsfeature

raising awareness, recognising diversity a national day of Women living with HiV in australia will once again be celebrated on 9 March. rebecca benson reports. Initiated by the National Network of Women Living with HIV — also known as the Femfatales — the National Day of Women Living with HIV in Australia, first held in 2016, is purposely placed on the calendar to coincide with international Women’s day on 8 March. “We felt it important to have a connection with the existing events and activities surrounding International Women's Day,” said Femfatales chair, Kath Leane (pictured). “This long-established event acts as an opportunity to increase both the visibility and the profile of HIV for women and girls worldwide.”

We want to open doors and start conversations so that all women have an opportunity to increase their knowledge and awareness about HiV. KATH lEANE The idea of a domestic awareness day was flagged due to concerns that Australian women are often unaware or uneducated

about the realities of HIV. “While in Australia women represent approximately 10 percent of the positive population, we did not

want to witness this number increase in any way,” said Leane. “Femfatales want to open doors and start conversations so that all

women have an opportunity to increase their knowledge and awareness about HIV.” The initial aim of an Australian day for positive women was to recognise the diversity of those who live with HIV: mothers, daughters, sisters, friends, work colleagues. The hope is that the event will continue to increase the visibility of all women living with HIV in Australia — women who often live in silence or secrecy due to HIV-related stigma and discrimination. This 9 March, the Femfatales encourage positive women across Australia to hold an awareness event to mark the National Day of Women Living with HIV in Australia; it could be a breakfast, a brunch, a morning or afternoon tea, a picnic, lunch or dinner. “Whatever the occasion,” said Leane, “use it to celebrate, advocate, inspire and empower.”

to mark the national day of Women living with HiV australia, susan paxton and diane lloyd share their stories. When people ask 64-year-old Susan Paxton how she was diagnosed with HIV, her answer is plain and simple: “through unprotected sex. It amazes me that people are still so shocked to meet a woman with HIV. People in heterosexual relationships seem to think that HIV could never affect them — but it does,” says Susan. Susan contracted HIV from her ex-husband, who she thought she was in a trusting relationship with at the time. Both Susan and her ex-husband had tested negative for HIV previously and it wasn’t until after the birth of her son that Susan became sick. It took doctors a few years to make the diagnosis because HIV wasn’t something they’d immediately test for in a woman back then.

By the time Susan was diagnosed in 1991, she had separated from her partner and was raising their two-year-old son on her own. Susan describes feeling like her “whole world was falling apart”. She was told that her son would be an orphan by the age of five or eight. Now, nearly 30 years on, Susan has a Phd in public health and HIV-related studies, and is a passionate advocate for the rights of women living with HIV around the world. Susan believes HIV stigma is the number one issue preventing women with HIV from living a long and healthy life. “despite the enormous leaps in progress we’ve made in HIV over the last 30 years, there’s still this assumption that HIV only affects gay males, and this simply isn’t true,” she says.

susan paxton

diane lloyd

”This ignorance and misunderstanding makes it difficult for women with HIV to get tested, access treatment and speak openly about their HIVpositive status.” Susan says her health has come a long way in response to new treatments. “We’ve moved into a completely new era of HIV health. The wave of

desperation and panic I once had about my HIV has passed, and my focus is now on monitoring my health and making sure everything is on track.” For 55-year-old diane lloyd, it’s disclosing her HIV-positive status to new partners that’s one of the most challenging aspects of living with the virus. diane was diagnosed with HIV 30 years

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ago. At the time, she was an injecting drug user and was working in the sex industry. diane contracted HIV from her ex-partner, and the diagnosis came as a huge shock. diane — who these days is heavily involved in the HIVpositive community, sitting on the board of NAPWHA and Femfatales — says the hardest thing she’s had to come to terms with was being told that she couldn’t have children 30 years ago. “For me, being told that I couldn’t have children was harder than the diagnosis itself. The fact that we’ve made such incredible advances in science and medicine means women today aren’t faced with the same ultimatum that I was — and I’m truly happy for other HIVpositive women for that.”

mOrE NEWS AT pl online


I work in health information and referral and [PL] keeps me not only up to date with treatment, but also with current lifestyle issues. Thank you.

I'd like to hear from a more diverse range of people: young as well as old, newly diagnosed as well as long-term survivors, gender diverse as well as men and women, people of colour.

I find [PL] easy to read with a good balance. It’s good to read overseas stories, as long as the bulk is Aussie-based. Keep up the great work! It's really appreciated.

More articles on ageing with HIV please — it’s hard to know which aches and pains are [HIV-related], medication, or just ageing! Keep up the fantastic work.

And the survey says... We’re always trying to improve Positive Living so that it remains pertinent to you, our dear, discerning reader. With that in mind, we ran an online survey over the summer break to determine what you think about PL. Editor Christopher Kelly nervously crunches the data. It’s crucial that Positive Living stays relevant to its readership and reflects the times. The magazine’s heritage spans 28 years. A lot has changed in the world of HIV in that time. While at the forefront of the everchanging HIV landscape, Positive Living itself has evolved over the decades. Throughout its transition, we’ve kept tabs on what you think about PL through readership surveys. So what did the latest survey tell us? For starters, it revealed that 72 percent of PL’s readership are HIV-positive; 25 percent HIVnegative. This chimes nicely with the magazine’s strapline: “For people living with and affected by HIV”. We discovered that 70 percent of PL’s readership is male, 30 percent female. Positive Living continues to attract a broad agerange of readers, with 97 percent aged 35 to 74. Gratifyingly, data shows that Positive Living retains a loyal readership, with more

Our aim is to empower readers to call out stigma and to inform those around them of the modern realities of living with HIV. POSITIVE LIVING EDITOR CHRISTOPHER KELLY

than 53 percent of people surveyed having read the magazine for a decade or more. However, happily, PL also attracts new eyeballs, with 6 percent having accessed the magazine for the first time during the past 12 months. With the publication now completely digital, the team was particularly interested in finding out how PL is read. The survey showed that most readers read PL

via a PC or laptop (56 percent), with other devices — such as mobiles (25 percent) and tablets (19 percent) — increasingly used to access content. When it comes to explaining the latest scientific advances, our team of writers try not to bog our readers down with gobbledygook. Our job is to make sure that anyone and everyone who reads Positive Living is clearly able to understand the information —

however complex the subject matter. Thankfully, an overwhelming number of readers find Positive Living easy to read (89 percent). Positive Living is also easy on the eye: 86 percent of readers think PL’s layout and design is appealing (take a bow Stevie Bee). As far as content is concerned, news and features appear to be the most popular (41 percent), followed by personal stories (19

percent) and treatment news (14 percent). Finally, having read PL, the majority of readers told us that they were left feeling informed (74 percent). This stat pleases me the most. At Positive Living we believe education is essential to overcoming stigma. Armed with solid facts, readers are enabled to call out stigma by confidently and knowledgeably confronting ignorance whenever it presents itself. Our aim is to empower readers to disclose their HIV status when safe to do so and to inform those around them of the modern realities of living with HIV: that with treatment the virus becomes undetectable, meaning a positive person is unable to pass the virus on and is able to live a long and healthy life. Thanks to everyone who took the time to participate in the survey. Your feedback is very much appreciated, as is your continued loyalty to PL.

SNAPSHOT Positive Living continues to attract a broad age-range of readers, with 97% aged 35 to 74.

Feedback shows readers are situated right across Australia.

72% of PL’s readers are HIV-positive; 25% HIVnegative.

More than 50% of people surveyed have been reading PL for more than a decade, proving that the magazine retains a loyal readership. However, PL continues to attract new readers with 6% having accessed the magazine for the first time during the past 12 months.

Most readers read Positive Living in flipbook format via a PC (56%). Devices such as tablets (19%) and mobiles (25%) are increasingly being used.

An overwhelming number of readers find PL easy to read (89%) and find its design appealing (86%). News and features are the most popular content (41%), followed by personal stories (19%) and treatment news (14%).

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I guess I'm pretty comfortable about things here, but there are some people with HIV living up in this region who haven't disclosed to many beyond their doctor and who live in fear of exposure. I wouldn't like to live with that level of stress.

LIVING IN THE BACK OF BEYON

Those of us living in capital cities take for granted the fact that we can access services easily, pop to the pharmacy for medications or go out with friends a about what irks us whenever we feel like it. As David Menadue discovered, fo people living in more remote parts of Australia such things are not so ea positiveliving l 8 l AuTumN 2017


K D

s medical and chat or positive asy.

DREW

NORTHERN WA

Nine years ago, Drew was offered a great job in a town in the Kimberleys in northwestern Australia. Drew and his partner had been living in Perth, but decided that the opportunity was too good to miss. And, while they might miss the big city, a more quiet and peaceful life had its attractions. While working in his new job, Drew was admitted to hospital with an infection and discovered that the staff had tested him for HIV without his permission. "I was annoyed that this had happened, and wondered what the repercussions might be when I tested positive. But the staff were very professional about it and gave me no cause for concern. It was a blessing in disguise in a way because it was a recent infection and I was able to be referred for treatment straight away.” The referral, though, involved a trip to specialists in Perth. Fortunately, the WA government has a patient assistance scheme for people living in remote locations. “It paid for my airfares to Perth, taxi fares to my doctor and a contribution towards two nights' accommodation. Confidentiality can be a huge issue in small communities so I was grateful for the anonymity of receiving treatment in Perth.” Although Drew would have liked more local peer support, he understands that such services are largely concentrated in Perth. Also, as Drew acknowledges: “It would be difficult to run an HIVpositive peer support group up here for confidentiality reasons.” Instead, the Kimberleys region is limited to counselling services by phone, “Which is still an extremely valuable service,” says Drew. “An online de-identified peer support group could be a way of addressing the uniqueness of living remotely with HIV," he suggests.

FRANZ

NORTHWESTERN VICTORIA Franz lives 17 kilometres from a small town in the Wimmera region of northwestern Victoria. "I came here for the affordable housing, the peace and quiet and because I don't need to live with the trappings of the big cities. I

like my own company although I appreciate my boyfriend coming to stay on the weekends.” For treatment, Franz travels 12,500km to Melbourne — a 14hour car trip. “I visit my GP at the Centre Clinic in St Kilda every three months at the moment. I could get six-monthly scripts for my HIV meds (which I collect from the Alfred Hospital) but I like to monitor my viral load regularly as my partner is HIVnegative and I don't want to put him at risk,” says Franz. Franz has never needed to access a GP locally as he leads a very healthy lifestyle. “I don't get the flu much and, if I did, I wouldn't go to a doctor for it.” Neither has Franz experienced any stigma. “I have a very upfront, honest manner when I meet people. I find most people respect that and like the fact that [HIV] isn't an issue for me and that I'm optimistic about it. I'm more embarrassed to admit I'm an opera queen than that I'm HIV-positive!" Franz has been ‘out’ about his HIV status from the beginning. “I had a T-shirt which I used to wear back in the nineties that pretty well broadcast it. It read 'Real Men chew their ddI' — and for the record, yes I did!”

WILLIAM

NORTHERN TASMANIA

William lives in Launceston in northern Tasmania and is able to walk to a good sexual health service at the nearby Launceston Hospital. "I can receive my HIV medications here and have confidence that the hospital staff will protect my confidentiality. We don't have any HIV specialists living here and rely on one to visit us from Hobart every three weeks or so. This does present problems if there are medical issues in between but my GP has arranged a shared care arrangement with my HIV specialist if there are any issues.” Launceston is big enough for William to feel relatively secure that his HIV status wouldn't become something that is gossiped about. “I tell the people I can trust and others just don't need to know. But there are people with HIV living up here, particularly those in smaller farming communities, who feel they can't risk unwarranted disclosure. They will travel to Melbourne to see a doctor and get

their HIV medications.” When it comes to peer support William has developed some friendship networks with HIVpositive people in Hobart. "I guess I'm pretty comfortable about things here, but there are some people with HIV living up in this region who haven't disclosed to many beyond their doctor and who live in fear of exposure. I wouldn't like to live with that level of stress."

CHEYNE

NORTHWEST NSW

Cheyne is a 64-year-old Aboriginal man who has lived with HIV for more than 30 years. Apart from a lymphoma he experienced a few years ago and developing type 2 diabetes, Cheyne has been well for most of that time. While initially working in health in Sydney, he later became a HIV/AIDS educator in northern NSW and an Aboriginal health outreach worker. “I moved up to where I'm living now when I retired as I wanted to live near my family,” says Cheyne. “I live about 80km from Dubbo, which is where I see my doctors for HIV and diabetes management, so it is a bit of a journey when I need to see them. I don't drive so I rely on a friend or hitch-hiking to get to my appointments. Hitch-hiking is good exercise!” There’s an Aboriginal health service near Cheyne’s specialists in Dubbo so he’s able to see all his doctors in one go. “I am on first names with all of them and have great confidence in their professionalism and understanding of my health needs. Initially the Aboriginal health service was taken aback when I rocked in and said, 'I'm HIV-positive' as they'd never had someone with HIV before, but they soon got up to speed.” In terms of peer support, Cheyne says he’s never really needed it. “I know I could ring services like ACON but I feel comfortable enough about being HIV-positive. I live in a town of about 700 people and nearly everybody would know I'm gay and some people know I'm HIVpositive. I have family here and good friends. I've got pretty well all I need." Thanks to lisa Tomney, margaret Crowley and Neil mcKellarStewart for help with this story.

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HIV+THE BODY A new series that explains the effect HIV has on particular parts of the body

The importance of a healthy gut the gut — which includes the stomach, small and large intestines, rectum and anus — plays a vital role in the body’s overall health and wellbeing. not only is it where food is digested and waste excreted, it’s also where nutrients and medications are absorbed into the blood. but there’s far more to the gut than that. The gut is controlled by a complex nervous system made up of hundreds of millions of neurons from the oesophagus to the rectum, leading scientists to dub it the ‘second brain’. Indeed, the gut is the only bodily organ able to think for itself and function independently from the brain. And while it’s long been known that the brain can affect the gut — butterflies in the stomach when we’re nervous or excited for example — what’s lesser known is that the communication goes both ways, with the gut able to send signals

to the brain. The brain interprets these signals as emotions (which is why you should always trust your gut instincts). About twothirds of the cells that make up the body’s immune system are found in the gut, which is why HIV’s first and most destructive assault occurs there. Within the first month of infection, the virus can overwhelm 50 percent of the gut’s immune cells. These immune cells (CD4) are especially susceptible to HIV because they have a protein on the surface — CCR5 — that the virus latches on to in order to invade. The gut is also home to around 100 trillion bacteria (collectively

known as the microbiome). HIV upsets the gut’s ecosystem by changing the composition of its microorganisms. Some scientists believe that an imbalanced microbiome contributes to the increased inflammation in people with HIV. People recommend probiotic foods — yogurt, sauerkraut, pickles, dark chocolate — to help rebalance the system. When starting or switching HIV treatment it’s common to

experience gut complications such as nausea, vomiting, loss of appetite, stomach pains, constipation, gas or bloating, and heartburn. These symptoms are usually mild and temporary. If, however, they persist it’s important to contact your healthcare provider. The most common gut complication of HIV is diarrhoea. It can range in severity from occasional loose stools to becoming an ongoing chronic condition. Living with diarrhoea long-term can be distressing, isolating and embarrassing. A healthcare provider can help identify the exact cause of the diarrhoea and prescribe treatment for long-term management.

Untreated diarrhoea is especially dangerous because it can lead to a loss of crucial nutrients (electrolytes) and dehydration, which can be life-threatening. Indeed, any change in bowel habits needs to be discussed with your doctor so that investigations can be performed to rule out serious disease. Bowel cancer and inflammatory diseases such as Crohn’s or ulcerative colitis, for instance, can present with diarrhoea. Diet, sleep and exercise all help to manage your gut and keep it healthy. Being mindful of what you eat and drink is the first place to start: drink lots of water (twothree litres a day); eat high-fibre foods (whole grain rice, bread, oats, vegetables, and fresh fruit); and cut out processed foods and bad fats. A healthy gut is linked to everything from an improved immune response, disease prevention — even a happier mind.

thepillbox

Where are we at with PrEP? in May last year, the therapeutic Goods administration (tGa) gave truvada its tick for use as a drug to protect against HiV. Describing the TGA’s decision as a “revolutionary development”, Darryl O’Donnell, Executive Director of the Australian Federation of AIDS Organisations (AFAO), said at the time: “In registering Truvada, the TGA has confirmed that this is a safe and effective way of preventing HIV transmission through sex. Truvada for PrEP gives people at risk a powerful new option for taking control of their health; it puts them in control to stay HIV-negative.” PrEP also offers enormous benefits to HIV-positive people as

well. “It is an important new method of practising safer sex with partners,” said Aaron Cogle, Executive Director of the National Association of People with HIV Australia (NAPWHA). “Using PrEP with Treatment as Prevention (TasP) allows both partners to share the responsibility for HIV prevention; it reduces the stress and anxiety that can be associated with HIV and sex. This means less pressure on positive people in casual sexual encounters and in serodiscordant relationships.” With TGA approval out of the way, the focus of attention

PBS-listed PrEP would make all the difference.” When the Pharmaceutical Benefits Advisory Board (PBAC) met last August, it was widely expected PrEP would receive the rubber stamp for subsidy. However, the submission was rejected. PBAC cited cost as the main reason behind its decision, describing the price submitted by manufacturer Gilead Sciences as not “feasible to clinicians and consumers”. O’Donnell expressed “great disappointment” at the news. “Without PBS listing, [PrEP] is a wasted tool,” he said. “This is proven technology.” Calls were

People are needlessly getting HIV while we wait for access to this prevention pill. quickly shifted to affordability. “For PrEP to have maximum impact, it is vital that anyone who is at high risk of becoming HIVpositive is able to afford it,” said NAPWHA president Cipri Martinez. “The only way for that to be achieved is for Truvada to be placed on the Pharmaceutical Benefits Scheme (PBS) as soon as possible.” O’Donnell agreed: “We have a national, bipartisan commitment to virtually eliminate HIV transmission in Australia by 2020. Affordable,

positiveliving l 10 l AuTumN 2017

subsequently made for Gilead to reapply with a revised financial model. “One that’s more realistic, more sustainable, and puts people before profits,” said Martinez. In reply, PBAC said it would welcome another submission from Gilead, one that addressed “the concerns about cost effectiveness”. Which brings us to now. Gilead intends to resubmit its application to PBAC within months, with an outcome expected in July. What that outcome will be is still anyone’s guess. One thing is certain though, as O’Donnell said: “People are needlessly getting HIV while we wait for access to this prevention pill.”


chronicling the end of the world

Randy ShiltS at the San FRanciSco chRonicle

THREE DECADES AGO, A JOURNALIST WROTE A BESTSELLING BOOK THAT WOULD FORCE AMERICA TO TAKE ACTION AGAINST AIDS. DOMINIC BROOKES REPORTS.

W

idely considered to be the seminal account of the early years of the aids epidemic, And the Band Played On reveals america’s initial lack of urgency to the emerging threat of an unknown disease — a disease that would go on to kill 35 million people worldwide. Published 30 years ago, And the Band Played On is an indictment of indifference and denial. “The bitter truth was that AIDS did not just happen to America — it was allowed to happen,” writes author Randy Shilts. Shilts was an openly gay investigative reporter at the San Francisco Chronicle and one of the first in the US to write about AIDS. “With a passion I have rarely seen equalled,” recalled colleague Susan Sward, “Randy pushed, wheedled and cajoled until his AIDS stories made their way from the back pages to the front page.” Before long, there would be no need for Shilts to push his editor into prominently placing stories about AIDS. When movie star Rock Hudson died in the summer of 1985 of an AIDS-related illness, the disease was making

front-page headlines around the world. Until Hudson’s death, AIDS “had seemed a comfortably distant threat to most of those who had heard of it before, the misfortune of people who fit into the rather distinct classes of outcasts and social pariahs,” wrote Shilts. “But suddenly, when a movie star was diagnosed with the disease, the AIDS epidemic became more palpable and the threat loomed everywhere.” Along with New York and Los Angeles, San Francisco was one of the epidemic’s epicentres, affording Shilts an unenviable vantage point from which to view the horrors unfolding. Describing the incentive to write the book, Shilts said: “Any good reporter could have done this story, but I think the reason I did it, and no one else did, is because I am gay. It was happening to people I cared about and loved.” The book’s title — And the Band Played On — was Shilts’s way of saying “business as usual”. In

other words, mainstream society looked the other way while gay men dropped like flies. “Nearly five years passed before all these institutions — medicine, public health, the federal and private scientific research establishments, the mass media, and the gay community’s leadership — mobilised the way they should in a time of threat,” wrote Shilts. “The story is a drama of national failure, played out against a backdrop of needless death.” HIV advocate and blogger Mark S. King recalls reading And the Band Played On for the first time. “I remember how heavy it felt in my hands,” said King. “Over 650 pages of science and grief and infighting and death. The book chronicled the end of the world. It detailed the beginning of the plague that — at the very moment I was reading the book — was killing my closest friends.” For King, the book was a validation. “Someone had finally called out a crisis that had existed under the radar for far too long. And thank God, everyone was reading it.” However, reaction from the gay community was mixed. As well as

targeting government inaction, bureaucratic incompetence and institutional homophobia, Shilts also placed blame for the AIDS epidemic on the gay hedonistic lifestyle; he had previously provoked ire by publicly endorsing the closure of San Francisco’s gay bathhouses. His views created a community backlash, with Shilts dismissed as a traitor to his own kind. When visiting the Castro district, he would be spat upon and openly booed. Despite the criticism, And the Band Played On became an acclaimed bestseller and made an international celebrity out of its author. It was while promoting the book in Australia in 1988 that Shilts predicted that AIDS in the Western world would, one day, “be as manageable as diabetes”. He would not live to see his words become reality. Shilts was diagnosed HIVpositive the day he finished And the Band Played On. “I literally pulled the last page out of the typewriter and went to the doctor,” Shilts recalled. “I said, ‘OK, now you can test me.’ He said, ‘I already have.’” Randy Shilts eventually died from complications

positiveliving l 11 l AuTumN 2017

of AIDS in 1994; he was 42. Shortly before his death, Shilts described AIDS as “character building”. “It’s made me see all of the shallow things we cling to, like ego and vanity,” he said. “Of course, I’d rather have a few more T-cells and a little less character.” Shilts was eulogised by AIDS activists Cleve Jones and Larry Kramer. “Randy’s contribution was so crucial,” said Jones. “He broke through society’s denial and was absolutely critical to communicating the reality of AIDS.” Larry Kramer said of Shilts: “He probably did more to educate the world about AIDS than any single person.” Three decades on from publication And the Band Played On remains in print and its author remembered as a fearless objector. “[The book] was the loudest cry of protest from a gay man at what the national government was doing to its own citizens,” said Shilts’s friend, author and journalist, Frank Robinson. “For someone to point the finger at the government and say they were partners in genocide took a hell of a lot of courage.”


newsouthwalesnews PositiveLifeNSW

The good news about HAND make the appointment at a time you know you’ll feel your best.

it is safe to say that not everyone living with HiV knows about Hand (HiV-associated neurocognitive disorder). HANd is a HIV-related condition that around 40 percent of people living with HIV (PlHIV) experience. When we first contract HIV the virus immediately infects many different cells and organs throughout our body, including the brain. Sometimes it doesn’t matter how long you’ve been living with HIV, sometimes even if you’re on HIV medication (cArT or combination antiretroviral therapy), low levels of HANd can still develop. HANd can be subtle and not fully noticeable but still affect how you function — a condition known as symptomatic HANd. so WHat’s tHe Good neWs? Early assessment, diagnosis and treatment are the keys to a better outcome for anyone living with HIV who is diagnosed with HANd. like anyone else who wants an active healthy life, the best thing anyone can do if they’re living with HANd, is to maintain a good diet and remain engaged, productive and physically active. reducing other lifestyle risk factors like giving up smoking, adopting a moderate use of alcohol and

a diaGnosis oF Hand can be a relieF Especially if you’ve been dealing with some uncertainty about your memory or other symptoms. It does not mean your life is going to significantly change. A diagnosis could mean a change in your HIV medication. Your symptoms can improve or even reverse. most people continue living productive and engaged lives with HANd. It will mean you will be able to get help to find and develop some new strategies to manage the impact of HANd on your life — socially, at work and at home.

other substances will also produce benefits. so WHat are tHe siGns You MiGHt be deVelopinG Hand? usually other people are the first to notice. These might be changes that are out of character for you. Your friends, partners or family are pretty good at spotting these things. These signs can be changes in your mood like more anxiety, or greater frustration and intolerance of things that didn’t

bother you before. They can be changes in your thinking, such as forgetting things more often, losing track of time or conversations, missing appointments, and having difficulty organising stuff in your life. They can also be physical changes like tripping or falling over a lot, bumping into things, and unexplained bruises. We all experience such things occasionally so these could be ‘normal’ for you. If, however, they start to occur more frequently, then it’s time to talk with your

doctor. If a partner, friend or family member comments, ask them to be specific about what they’re noticing; details can be useful to take to your doctor. diagnosis is a combination of excluding other causes and working out what needs more investigation. Assessment for HANd will most likely be a neurocognitive evaluation, which is a question-and-answer type screening test. The test can indicate the need for further analysis, such as an mrI. If you ever have this kind of assessment,

sHould You be Worried about Hand? If you have some odd symptoms or concerns, talk about these with those people closest to you and perhaps bring them up with your doctor. don’t be worried if you find there is something that needs checking out. An early assessment can put your mind at rest. The sooner you know what’s going on, the better position you’re in to deal with it, manage it and get on with life. l To talk to someone about your

concerns, call Positive life on (02) 9206 2177.

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 12 l AuTumN 2017


victorianews

New digital space for men struggling with mental health pete is a new online community investigating the potential to fight stigma and help improve the mental health and wellbeing of men living with HiV. We know that positive connections with people living with HIV and equipping ourselves with the right information are two great ways to tackle stigma and build up resilience. pete is taking those two stigma-fighting approaches online to see if they pack the same punch when delivered in the digital space. While Pete hosts a series of articles around issues affecting men living with HIV — including personal stories — it also offers

the format will offer advantages and solutions to longstanding issues. “Pete is available across Australia,” he said. “All you need is internet access. meaning men living with HIV can connect in real time whether you’re on a computer in mount Isa or on a mobile in Ballarat. You don’t need to be based in a metropolitan area.” The site also offers a confidential

peer-moderated live chats and forums for sharing experiences and talking through a range of topics with like-minded men. “We’ve essentially taken the concept of peer support and education, which we know has been effective in the community for the last three decades, and tried to translate that into the digital space,” said Victorian AIdS Council (VAC) project worker Caleb Hawk. While the online delivery may not have the personal feel of face-to-face interactions, Hawk hopes

space, enabling users to create a unique username and to choose whether or not to receive notifications about new content or participate in live chat sessions via SmS, email, or Twitter. developed as part of beyondblue’s stride project with funding from the movember Foundation, Pete was developed in partnership with VAC, ACON, living Positive Victoria and the Centre for Social research in Health (uNSW). If Pete proves to be successful, the format could then be modified to meet the needs of other target populations.

Undetectable equals untransmittable living positive Victoria is proud to partner the prevention access campaign and endorse the ‘undetectable equals untransmittable’ (u=u) consensus statement. The statement supports solid evidence that people living with HIV (PlHIV) on antiretroviral therapy (ArT) for at least six months, who have an ongoing undetectable viral load and are engaged in care, have a negligible to non-existent risk of sexual transmission of HIV, anally or vaginally. This evidence has the backing of leading health researchers around the globe. “This campaign addresses the new discoveries in science about HIV transmission and viral load

and speaks to what living with HIV means to those in Victoria in 2017,” said richard Keane, living Positive Victoria president. “We are proud to support this campaign and the efforts to change the dialogue in our community about what it means to live with HIV.” Based on research from studies around the world including HiV prevention trial network (Hptn 052), opposites attract, and the swiss statement, serodiscordant couples in

Continued and reliable HIV suppression requires selection of appropriate agents and excellent adherence to treatment. HIV viral suppression should be monitored to assure both personal health and public health benefits. U=U Consensus Statement

heterosexual and same-sex relationships did not transmit the virus to their partners when the HIV-positive partner had an undetectable viral load. In the

most recent study, partner, there were zero transmissions out of 58,000 condomless sex acts between people with HIV with undetectable viral loads

and their HIV-negative partners. “Sharing the knowledge of these studies is a powerful tool for PlHIV and as a way to combat the stigma that positive people often face,” Keane continues. “We understand ‘undetectable’ does not mean ‘cured’ but being on ArT has major health benefits and that information will help members of our community make informed decisions about treatment and their sexual health.” living Positive Victoria joins other Australian HIV organisations in supporting the u=u Consensus, including Positive Women Victoria, NAPWHA, and the Australian Federation of AIdS Organisations.

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

positiveliving l 13 l AuTumN 2017


queenslandnews

Stamp out syphilis While, over the last two years, Queensland has experienced a reduction in HiV notifications — a 38 percent decrease in the brisbane region, 21 percent over the entire state — concurrently, syphilis rates have doubled. more than 70 percent of syphilis infections are among gay men and other men who have sex with men, with one-third of these among HIV-positive men. Queensland Positive People is therefore raising awareness of syphilis among positive men, and encouraging regular testing and early treatment. A number of behavioural and

biological influencers are thought to be driving this syphilis spike among positive men, including decreased condom use — especially among sexual partners of a poz status and negative partners on PrEP. There could also be unique factors of the immune system at play that may make people with HIV more susceptible to the syphilis bacteria. With a higher instance of syphilis comes an increased risk of exposure, particularly among

men with multiple sex partners. It doesn’t help that syphilis is very easy to catch and pass on

through most kinds of sex, including oral and skin-toskin contact. You might not know you have syphilis as symptoms aren’t always noticed. If symptoms do occur, they may come and go at first. These may mostly consist of sores (small, open and red presenting anywhere on the

body and in the mouth or bum) and a flat red rash (also anywhere on the body, but commonly on the soles of the feet and palms of the hand). Although syphilis is treatable and curable there is no vaccine, meaning it can reoccur. Given syphilis is a very serious condition (affecting the heart and brain), and one that can progress more rapidly among HIV-positive people, it is important to test regularly — every three months should suffice. Only by testing and treating can we stamp out syphilis.

Quit now. You’ll be so glad you did! recent years have seen tremendous improvements in HiV treatment — treatment that has extended life expectancy and the quality of life for people living with HiV (plHiV). Yet cigarette smoking is still all too common in our community, with tobaccorelated deaths completely outstripping HiV-related deaths. recent studies estimate that PlHIV who continue to smoke tobacco live six to seven years less than those who have never smoked; the good news is you can regain five to six years of your life by quitting. Other research shows that every cigarette takes 11 minutes off your life. To support positive people in Queensland to quit smoking and reduce tobacco-related harms, QPP is relaunching its positively Quitting project. This refreshed and revised program comprises a new-look support guide containing solutions for quitting as well as strategies for

managing triggers and cravings. Additionally, QPP continues to reimburse costs of quitting therapies, such as nicotine substitutes. And now, in light of emerging evidence of the benefits in harm-reduction obtained through electronic cigarettes (being 95 percent less harmful than cigarette tobacco), QPP will also support a 50 percent reimbursement of the hardware items for these products (excluding eliquid). E-cigarettes deliver nicotine into the body without many of the carcinogens found in tobacco

cigarettes. However, in Australia, only nicotine-free e-cigarettes can be purchased as nicotine-based eliquid isn’t approved as a medicine. despite this, QPP in partnership with the university of Queensland is recruiting participants for a Brisbane-based trial of nicotine ecigarettes as a quit smoking aid. If you reside in the Brisbane area you can sign up for the study here (or contact us for further details). We are also partnering the development of a larger e-cigarette trial; recruitment will begin in Queensland, NSW and Victoria in 2018. You can register interest here. QPP encourages PlHIV to consider every quit option available. Quitting smoking is not always easy, but we are here to help. remember, by quitting smoking you’ll substantially reduce and eliminate increased risks to your health. You’ll also save money to spend on all the good things in life . . .

QPP is talking about stigma Qpp is currently filming the third instalment of its talking about . . . film series. This time, we’re talking about HIV stigma. These new films follow a number of PlHIV as they share their stories of stigma, vulnerability and resilience. As PlHIV navigate stigma differently, it is QPP’s aim to try to capture some of these diverse experiences. These latest films reflect social research findings that show, while HIV can be a challenge, being positive does not mean being a passive receptor to stigma. The films demonstrate that PlHIV are overwhelmingly resilient in the midst of what remains a significant life challenge. These films call on the wider community to unite in the fight against HIV-related stigma. QPP will announce the launch date of the Talking About Stigma campaign in the coming months. don’t forget to follow Qpp on twitter to make sure you don’t miss the release date of these incredible stories.

queensland positive people | 21 Manilla Street East Brisbane 4169 | )07 3013 5555 or 1800 636 241 | w qpp.net.au positiveliving l 14 l AuTumN 2017


POSITIVE VOICES POSITIVE PEOPLE SHARE THEIR EXPERIENCES OF LIVING WITH HIV

THERE IS A VIEW THAT, IN ORDER TO HELP END HIV STIGMA, POSITIVE PEOPLE SHOULD, WHENEVER POSSIBLE, DISCLOSE THEIR STATUS. SO, TELL ALL OR KEEP SHTUM? NEMO

Why should I tell some random stranger online or at a bar, who I’ll never sleep with, something intensely personal about my life? my health, sex life, finances and emotions are my business. I'll share when I see fit and when I feel the person is trustworthy. Problem is, if you share with one, you share with the village.

I’m HIVpositive and I don't care who knows it!

Why should I tell some random stranger online or at a bar something intensely personal about my life?

ANGEL

Non-disclosure adds to the stress of being positive. Fear of being discriminated and stigmatised keep people with HIV off needed treatment and care. We need to raise our voices — united — and fight for our rights and ourselves.

JAMES

I have chosen the disclosure path for the last 15 years; it has made my life so much easier. It is the right thing to do for me.

BROOKE

I tell everyone. Within months of being diagnosed I realised how little I heard about HIV and women anywhere. I told all my friends. I've told co-workers and family members. I was told by doctors and support group speakers NOT to and don't see how that helps. If no one talks about [HIV] the straight world thinks they are in a huge safety bubble, someone needs to tell them otherwise.

EVAN

With only one minor slip up over the last six years, I have always disclosed to my sexual partners, both online and offline. Of course my doctor and dentist know, even my martial arts teacher and some of the students are aware, beyond that I refuse to have some HIV evangelist preach to me the gospel of disclosure. I say to you walk a mile in my shoes before casting judgment.

to have added stress, worry and guilt. If you don't disclose to a partner right away, when you do decide to tell them, they are going to ask why you didn't tell them. This is when problems arise. There may be those who are afraid and withdraw, but there are people who are not afraid and who will be there to support you. How can anyone receive the help they need if their family and friends are not aware of what is going on in their life?

BRADFORD

KEN

We need everyone who is HIVpositive to come out if we are to get rid of the stigma associated with HIV. Having disclosed you’re positive means you can feel comfortable, confident and not have fear when you disclose to a sexual partner. You're not going

The parallels with the advancement of lGBT rights are unavoidable: we become less scary when we are known, we become known by disclosing and sharing our experiences. Yes, it is easier for some people who are risking less (and I count myself among them)

and that confers an obligation to pave the way for others, but the only time something can be used against you is if you are trying to hide it. Outraged by stigma? Our own hiding drives it.

ANTHONY

Some of the people who are the strongest advocates of absolute disclosure are those who don't have jobs or whose jobs are in the HIV bubble, which is far more supporting than in the rest of the world. I make decisions about disclosure all the time, and because of the realities of my life, they are pretty careful ones. I feel most ethical and empowered when I am supported in selfdetermination around disclosure decisions, rather than made to feel that the times I disclose are not enough and the times I don't

indicate that I'm a bad person. Stigma placed on positive people by other positive people is more common than we want to admit, and probably some of the hardest to accept.

JOHN

There are many factors that go into a decision to disclose. It’s easy for me to disclose because I’m a white male of a certain age, associate mostly with other gay men of my generation, volunteer my time with HIV organisations and, because I’m retired, don’t have to concern myself with the reaction of a potential employer. Others may not share my privilege, so their experience will be different. Coming out for them may be fraught with danger, with discrimination, with rejection. While it may be good for the community at large that they come out, it may not be good at all for them as individuals. Each of us has to make our own decision in these matters and we shouldn’t force others to come out unless — and until — they’re ready to do so. I don’t believe there’s a moral duty to disclose to sexual partners. What we do have, is a moral duty not to put our sexual partners at risk of infection.

MICHAEL

I am HIV-positive and I don't care who knows it. What others think of me is none of my business. let’s end the stigma.

It’s easy for me to disclose because I’m a white male of a certain age, associate mostly with other gay men of my generation, volunteer my time with HIV organisations and, because I’m retired, don’t have to concern myself with the reaction of a potential employer. Others may not share my privilege, so their experience will be different. positiveliving l 15 l AuTumN 2017


THE

backpage

THE COLOUR PURPLE ON WHAT TO ASK YOUR DOCTOR FOR WHEN YOU’RE POSITIVE AND 60 1 A bone density scan.

Many clinics wait until a patient suffers a fracture before measuring bone mineral density.

2 An anoscopy. Anal cancer is more common in longterm HIV survivors.

3 Waist-to-hip ratio

measurement. This determines whether you have lipodystrophy, which can increase cardiovascular risk.

4 A hormone blood level

test. Levels of testosterone and thyroid hormones are not usually tested unless patients show symptoms.

5 An electrocardiogram.

This important cardiovascular test records the heartbeat and should be standard, but is often neglected.

First, let’s get one thing straight — eggplants are a fruit not a vegetable. Versatile, functional and nutritional, eggplants (or aubergines as they’re otherwise known) promote an impressive array of health benefits. packed full of fibre and phytonutrients, eggplants help keep a heart healthy. When baked, they have the power to lower bad cholesterol. eggplants are also considered brain food, helping to enhance memory and increase cognitive ability. and by containing copper and vitamin K, they help strengthen bones too. never bin the skins as they’re teeming with antioxidants that help optimise the immune system.

Dig the fig! an ancient food, figs are a very nutritious, succulent fruit with a fleshy skin and edible seeds inside. they’re high in fibre and contain essential minerals such as magnesium, calcium (good for bone density) and potassium, which lowers blood pressure. they also contain vitamins K and e that promote health and wellness, as well as powerful antioxidants that neutralise free radicals in the body and fight disease. native to egypt, figs thrive in hot, fairly dry areas such as the riverland in south australia. When ripe, figs are sweet and juicy. they’re also perishable so should be refrigerated if not consumed within a couple of days. select figs that are plump and tender with a rich, deep colour. use in cakes, salads and desserts. positiveliving l 16 l AuTumN 2017

QUOTEUNQUOTE

We must understand AIDS is something we still are fighting and we can make tremendous strides if we keep this at the top of our list. We’ve come so far, it would be such a shame not to take it all the way. Alicia Keys, singer and co-founder Keep a Child Alive

GOFIGURE q

Five out of 10 children living with HIV are still not receiving the treatment they need. Without treatment,

51% of children with HIV will die by their second birthday.

Positive Living Autumn 2017  

A magazine for people living with and affected by HIV.

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