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The Quilt turns


tips for remembering pill time






THE ROAD TOWARDS A CURE 5 Hetero positive guys tell it straight

TELLING TALES with Armistead Maupin

positiveliving ISSN 1033-1788 EdITOr Christopher Kelly

david menadue Vicky Fisher CONTrIBuTOrS rebecca Benson, dominic Brookes, Craig mcClure, david menadue, Steven Petrow, darian Taylor dESIGN Stevie Bee design








Free subscriptions are available to HIV-positive people living in Australia who prefer to receive Positive Living by mail. To subscribe, visit or call 1800 259 666. contributions Contributions are welcome. In some cases, payment may be available for material we use. Contact the Editor EmAIl: all correspondence to: Positive living PO Box 917 Newtown NSW 2042 TEl: (02) 8568 0300 FrEECAll: 1800 259 666 FAx: (02) 9565 4860 WEB: 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 2018 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 Wins for Westmead scientists from sydney’s Westmead institute for Medical research have made two important discoveries. The first better identifies how HIV hijacks the immune system to facilitate its replication and spread. In another “very important technological advance”, Westmead researchers have located hidden HIV cells. While antiretroviral treatment can suppress HIV to undetectable levels, elements of the virus remain in latent reservoirs. “By identifying these cells and targeting them our plans would be to then cure individuals,” said Associate Professor Sarah Palmer. more cure news page 5

indigenous HiV warning indigenous australia’s syphilis epidemic is leading to a rise in rates of HiV, say experts. “We’ve seen this incredible resurgence of syphilis and now we are seeing HiV where we have never seen it before,” said cairns sexual Health service director, dr darren russell. far north Queensland’s syphilis outbreak began in 2011 and has since spread to the nt, Wa and, most recently, sa. “there was always a concern that HiV could piggyback on that because HiV and syphilis tend to go together,” said russell.

the warning came after an emergency roundtable on HiV was held in cairns to discuss the crisis. professor James Ward, from the south australian Health and Medical research institute, who attended the conference, said, while the number of indigenous HiV infections was traditionally not huge (around 20 a year) it was now almost double that. “and that’s very problematic,” he said. “because once it reaches a tipping point, it will move into an endemic state.”

CdC endorses u=u World first

online tool to help with depression a world-first online tool — iadapt — has launched to help treat depression and anxiety experienced by gay and bisexual men living with HiV. Developed by the mental health unit at Sydney’s St Vincent’s Hospital, the virtual clinic provides participants with a free, confidential psychological program. “This provides an exciting opportunity to deliver help to patients who need it,” said researcher Dr Mike Millard. “High-quality face-to-face therapy is not always available to patients, especially those in rural and remote areas. This allows people to learn to self-manage depression and anxiety in their own time, in the privacy and comfort of their own homes.”

one of america’s highest authorities on HiV prevention, the centres for disease control (cdc), has formally endorsed the u=u message — undetectable equals untransmittable. In a statement, the CDC said, “When [antiretroviral treatment] results in viral suppression, it prevents sexual HIV

transmission.” The statement then went on to cite three different studies — including the Australian-led trial Opposites Attract — that found no HIV transmissions between sexual partners when the HIVpositive person was virally suppressed. “This means people who take ART daily as prescribed and achieve and maintain an

undetectable viral load have effectively no risk of sexually transmitting the virus to a negative partner,” read the statement. Bruce Richman of the prevention access campaign, specifically initiated to spread the U=U message, called the acknowledgement “remarkable”. “This is the moment we have

Tributes flow for levinia australia’s HiV sector has lost one of its most tireless champions. For more than 30 years, Levinia Crooks served as an advocate for the rights of people living with HIV. Crooks first became involved in Australia’s HIV/AIDS movement in the mid1980s, and, over the decades, worked in a variety of roles in both the community and clinical sectors. For the past 18 years, Crooks was CEO of the Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM).

Among the many people within the sector to pay tribute to Crooks was the Doherty Institute’s Professor Sharon Lewin. “She befriended, encouraged, persuaded, inspired, challenged, was tireless and passionate, extraordinary, energetic and influential. For those who worked with her, her passing is intensely sad. For those who follow in her path, it is worth considering the incredible impact one person can have.” (See page 4)

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been waiting for,” he said. However, Richman acknowledges that, while the CDC’s statement is a huge step forward, the fight is far from over. “There’s still a lot of work to be done getting the [U=U] message out accurately with our partners, especially in parts of the world where we see the most stigma and prejudice.” (See page 4)

service training to meet needs of older plHiV a training program for frontline aged-care staff has begun in Wa to provide support to older people living with HiV. Developed by ASHM, the scheme was officially launched by long-time HIV advocate, Ita Buttrose. “The program aims to assure older men and women with HIV that their needs will be met when they are seeking aged-care services,” said Buttrose. “It will also help remove barriers that in the past might have excluded or discriminated against them and their aged-care needs.” The program covers home, community and residential care settings, with a focus on education. “Myths surrounding HIV often form the basis of stigma and discrimination,” said Buttrose. mOrE NEWS AT pl online

thenewsfromASHM2017 Rebecca Benson reporting

Taking a whole-ofpatient approach With an ageing positive population on many people’s minds, the impact of co-morbidities on people with HiV was the subject of much discussion at conference. Many comorbidities — diabetes, cardiovascular disease, osteoporosis and cancer — share an association with the virus. it is important, then, said speaker professor Georg behrens from Germany, to adopt a “whole patient approach” when caring for people with HiV. “in addition to treating the virus, attending to the comorbid conditions is necessary for optimal management of HiV,” he said.

What do the numbers say? the big news out of the 2017 australasian HiV & aids conference was the muchanticipated release of the Kirby institute’s annual surveillance report. Data shows that new rates of HIV diagnoses in Australia in 2016 followed a familiar pattern to previous years, hovering around the thousand mark — 1,013 to be precise. Of those 1,013 positive diagnoses, 70 percent of transmissions (712) occurred primarily through maleto-male sexual contact, while heterosexual transmissions (209) accounted for 21 percent. Drilling the total down state by state: NSW recorded 317 HIV diagnoses; Victoria 312; Queensland 195; WA 92; SA 42; NT 23; Tasmania 19; and ACT 13. Of the estimated 26,444 people living with HIV in Australia in 2016, 89 percent knew their status and — of those diagnosed — 86 percent were on treatment. Of those on treatment, 93 percent had acquired an undetectable viral load. Meaning, Australia is fast

among aboriginal and torres strait islander people in 2016 reached 46. While the number is low, it represents an increase of 33 percent since 2012. (during the same period, rates of HiV among australia’s non-indigenous population decreased by 22 percent.)

on its way to achieving the UNAIDS 90-90-90 target. However, the Kirby report does throw up some concerns: l based on cd4 counts, a third (33 percent) of the diagnoses were recorded late — i.e., transmission occurred at least four years prior to testing. l HiV notifications recorded

l With prep trials rolling out in nsW, Victoria and Queensland, 2016 saw a total of 7,266 gay and bisexual men on prep — while that’s a forward step, it’s equivalent to just 6 percent of the estimated number of HiVnegative gay and bisexual males in australia. Among the better news contained in the Kirby report, harm-reduction strategies to minimise HIV among people who inject drugs continue to be highly successful; as do biomedical interventions to minimise mother-to-baby transmissions. And the incidence of HIV notifications among Australia’s female sex workers also remains

extremely low — among the lowest in the world. So to summarise, HIV diagnoses in Australia remain stable. More men who have sex with men (MSM) are testing than ever before. Treatment coverage has increased considerably over the past five years, with a corresponding upswing in the number of positive people recording undetectable viral loads. And while consistent condom use among MSM has declined in recent years, more are embracing non-condom-based prevention strategies such as serosorting, strategic positioning, TasP and PrEP.

In a nutshell: the latest Kirby findings on HiV highlight the need to maintain successful strategies of testing, treatment and prevention. the report also shows a need for greater prep access and a strengthened focus on prevention programs targeting the aboriginal and torres strait islander population.

spreading the word With the death of long-time asHM ceo levinia crooks only weeks before, this year’s asHM conference was understandably a poignant affair. at the opening of the conference, associate professor edwina Wright (aboVe) led the many tributes to one of australia’s most admired HiV advocates. in fact, throughout the conference, crooks was remembered fondly by attendees across the sector for her dedication and commitment to australia’s HiV response. mOrE NEWS AT pl online

perhaps the most talked about topic at this year’s asHM conference was u=u (undetectable equals untransmittable). A community brief launched by Canadian organisation ICASO and providing detailed analysis of the implications of U=U for people with HIV, received universal support from Australia’s peak HIV agencies. “U=U breaks down the sero-divide, which has been so detrimental for so many years across our communities,” said Darryl O’Donnell from the Australian Federation of AIDS Organisations. Responding to the document, Cipri

Martinez from the National Association of People with HIV Australia said: “It’s time the world took notice of the new facts of what it means to be living with HIV in 2017.” Unsurprisingly, PrEP was

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another hot topic, with numerous speakers discussing Australia’s rollout of the preventative drug. One of the key points made was the need for rapid up-scaling of PrEP provision in the community. Also up for discussion was inequity of access. Those currently accessing PrEP through state-sponsored trials tend to be gay, educated, and Australian-born. People born overseas and those from Indigenous communities were found to be significantly under-represented. In that regard, speakers called for strategies to try and provide greater access to PrEP to individuals from marginalised demographics.



The road towards a cure We remain many years away from a cure that could be offered to the almost 37 million people living with HIV throughout the world. But, as Craig McClure and Darian Taylor report, in 2018, researchers will explore a number of approaches that might one day bring an end to the need for people with HIV to remain on lifelong treatment.

Latent reservoirs Finding a way to eliminate latent HIV reservoirs in people living with HIV is the ‘Holy Grail’ of cure research. Many approaches now being tested towards finding an HIV cure involve either ‘shocking and killing’ (also known as “kicking and killing”) HIV-infected cells in latent reservoirs using LEFT Gene therapy involves extracting immune cells and genetically modifying them latency-reversing RIGHT Eliminating latent HIV is the Holy Grail of cure research therapies, or ‘blocking and locking’ those cells. modified genes through the research in the field of gene Other approaches include ways to purposes of creating an effective whole body. therapy is the CCR5 receptor — a immune response that will make cells resistant to infection, crucial entry point for HIV to permit long periods of sustained to remove their susceptibility to Learning from cancer infect healthy CD4 cells. This viral remission. These clinical infection, or to use antibodies Immune checkpoints are strategy is being researched in studies are designed to reduce and other means to allow molecules on the surface of cells three different ways, all of which viral reservoirs and increase immune functions to work that either “turn up” or “turn require the genetic alteration of immune control during hyperagainst the virus even without down” (accelerate or inhibit) the immune cells. The first strategy, acute HIV infection. Another kicking or locking. strength of a molecular signal preventative in nature, aims to study is also underway in South Early intervention sent by the immune system to Africa. The results of these studies genetically edit cells to remove Understanding more about what disease-controlling cells. HIV CCR5 so that HIV cannot infect will strongly inform is going on in the immune system understanding about whether infection — like many cancers — them. A second strategy would in early HIV infection and how to is able to disrupt the immune enable immune cells to find and manipulation of viral reservoirs create ‘better’ immune responses system’s efforts to prevent or fight HIV more efficiently. The and immune responses during against HIV in people who are minimise the effects of infection, immune cells are genetically the earliest stages of viral recently infected, is an important by turning down the T-cell signal modified to better detect HIVinfection does indeed translate step in improving treatment for that tells the immune system to infected cells in latent reservoirs into beneficial effects such as HIV, moving toward ‘sustained sustained HIV remission after the in the body. The third approach is do its work. HIV-infected cells are viral remission’ without therapy, particularly rich in these immune the most complex, and involves withdrawal of ART. and creating a vaccine against checkpoint receptors, as are removing or ‘editing’ HIV from HIV. cancer cells. Current research Gene therapy the DNA of infected cells. To date, little is known about aims to develop drug therapies Gene therapy aims to identify Gene therapy involves the mechanisms of sustained HIV genetic characteristics that help that target immune checkpoint extracting immune cells from remission. It may be a delicate to naturally control the virus in HIV-positive individuals and then receptors which prompt the cell balance between using drugs early some people living with HIV to stop whatever immune job it is genetically modifying them. enough to keep the HIV reservoir doing and revert to its latent known as ‘elite controllers’ or There are many challenges in this small, but not so early that the state. A few drugs to target these ‘long-term non-progressors’ and area of cure research. It has been immune system is not able to molecules are already available to to develop mechanisms for difficult to detect and extract encounter enough HIV to develop transferring these genetic treat some forms of cancer. resting white blood cells infected a good memory response to be characteristics to others who do with HIV, i.e., one of the From ‘shock and kill’ used if and when the virus not have that ability. This strategy components of the latent HIV rebounds. may have its limitations since reservoir. Researchers are working to ‘block and lock’ Upcoming Thai clinical trials elite controllers may still on developing a method to deliver The “shock and kill” HIV cure will hopefully answer the strategy, which proposes the use experience inflammation that gene-editing technology directly question of when to treat during of “latency-reversing” drugs, has into the body. The hope is that enhances other disease risks. acute HIV infection for the received attention in recent years. this approach will quickly spread One of the main targets for

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This cure strategy aims to flush (or shock, or kick) the virus out of latent reservoir cells into activity in the bloodstream using latency-reversing agents. Once the infected cells are activated, other drugs — perhaps a yet-to-be discovered therapeutic vaccine or antibody-based therapies that would harness the body’s own response to HIV — would then kill the infected active cells. The harnessed response might be sufficient even without flushing out the virus. Some of the latencyreversing agents being considered are currently used as cancer treatments, although researchers are also trying to discover new drugs. One of the agents currently under investigation is called a Histone deacetylase (HDAC) inhibitor. Repeated experiments with different HDACs have shown that they wake up reservoir cells and although they are short-lived, so far no HDAC has been able to prevent new cells being ‘seeded’ with HIV and then returning to latency in a reservoir. All of the above research will have implications for what we know about HIV prevention, HIV testing and diagnosis, the treatment of HIV with new therapies and, finally, a possible cure for HIV. People living with HIV and our allies need to learn more about what is happening along the road to curing HIV in order to determine how best we can contribute. Our perspectives are unique and important, and need to be heard in the development of strategies that might one day bring an end to the need for people living with HIV to remain on lifelong antiretroviral therapy. mOrE CurE NEWS AT HiVcure


travails On a recent trip to Bali, David Menadue discovered that, for people with HIV, it pays to be clued up about travel insurance.

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s a 65th birthday present to myself — i made it! — i recently booked a flight to bali with a friend. aaahh, two weeks of lying in the sun, reading books and admiring the locals. at least that was the plan.

Unfortunately, not long into the trip I had a medical event. At first I thought it was the result of consuming a piece of bad fish: the ubiquitous ‘Bali Belly’. A friend recommended we head to the International SOS Clinic in Seminyak as they apparently know how to cure such things fairly quickly. That’s where my dramas really began. During a check-up, doctors noticed an irregularity with my bloods — possibly indicating a heart attack. After being presented with a bill for $450, I was referred to the cardiologist at nearby Siloam Hospital. At this stage, my mind turned to travel insurance. My insurance company is aware of my HIV status and has agreed to cover me as long as I won't be claiming for an HIV-related illness. (While an argument could be made by a hard-nosed insurer that cardiac issues could be related to HIV, this company had not made it an issue in the past.) I get my friend to contact the company and I'm assured that I will be covered if a cardiac event has happened in Bali as long as there is no evidence of any cardiac symptoms to that date. I am detailing my experience here as I think many HIV-positive people who have other co-morbidities may find tips on travel insurance helpful.


some travel insurance companies offer cover from date of purchase of the policy; some only offer it from the date of leaving the country. also, some will allow cover for up to six months after return if a link to an incident while on your trip can be established. A representative from the insurance company rings me on my first day in Siloam Hospital and proceeds to reassure me that they will do their best to process the claim before I leave as it will likely be ‘pretty pricy’. (The hospital charges inflated prices as it is geared particularly for Westerners who have some kind of insurance.) I tell the rep that the cardiologist wants me to be an inpatient for five days while they administer blood thinners to enable me to fly back to Australia as planned. I’m not unduly upset about this because I’m being thoroughly checked out; I’m put through scans, ultrasounds, x-rays and multiple blood tests — the whole caboodle. I have given my insurance company the names and phone numbers of three of my doctors, including my cardiologist, who can all verify that there was no preexisting cardiac condition before the date of my policy purchase. Three days into my hospitalisation and I get another call from the company saying my GP has given insufficient information to verify this. me: “What information did he provide?” Company: “Four pages of summaries of your health.” me: “my GP has gone to the trouble of writing four pages of

summary on my health and that is insufficient?” Company: “We require two years of your medical records.” me: “Well, try the others and get back to me.” In the meantime, I email those doctors myself and inform them about what is going on so they will be prepared. By day four of hospitalisation, they have not heard anything. On the day I am to be discharged I hear from the company that my other doctors have not gotten back to them in time. “Because you only just contacted them, maybe?” I reply.


there is every likelihood that your travel insurance company will not settle your costs with an overseas supplier in a timely way so you’d better hope there is something left on your credit card! they will prefer that you pay upfront and they will reimburse you once they have done an investigation. My claim, which includes the costs of re-routing my travelling companion from his planned flight back to Adelaide so as to accompany me back to Melbourne as my cardiologist recommended, comes close to $5,000. Whether or not I am reimbursed remains to be seen. But enough of my travails.

PRE-EXISTING CONDITIONS The main issue that people with HIV worry about with travel insurance is pre-existing conditions. Some travel insurance companies have

automatic exclusion policies for HIV or AIDS while others — such as Covermore — have moved with the times and will cover you if you have HIV, or even if you have pre-existing AIDS illnesses (as long as you don’t intend to claim if an AIDS-defining illness occurs during the insurance cover). If you want cover for this possibility, you will have to pay an extra premium. I checked QBE Insurance’s exclusion policies, too. They provide cover to a number of credit card travel insurance policies such as the one offered with the NAB Platinum Premium Visa Card. If you purchase your travel with at least $500 on the card, you get automatic travel insurance protection. However, almost all pre-existing medical conditions are not covered by this card. But while there is a specific exclusion for coverage of anyone with an AIDS-defining illness, HIV itself is not mentioned. A QBE representative told me that insurance would be granted if you have a pre-existing condition but only on the condition you weren’t going to claim for it. In other words, only new medical conditions or other non-medical travel claims could be covered.


check the product disclosure forms (pdfs) for each travel insurance policy you take out (including credit card associated ones) to see if they will provide cover for pre-existing conditions and if they will still cover if you don't intend to claim for that condition. some companies will cover pre-existing conditions for an extra premium. be prepared for extra medical costs, though , if you end up ill with the condition.

for information for plHiV visit for news of travel restrictions visit

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Other tips for the positive traveller n some countries still discriminate against the HiV-positive traveller even though many (such as the united states and china) have reversed their travel bans in recent times. singapore, for example, requires a mandatory HiV test if you are intending on staying for longer than 30 days. also, many Middle eastern countries have restrictions on HiVpositive people, but mainly if you are intend to live or work there for long periods. if you’re travelling to certain countries and you become ill, you might be able to take advantage of reciprocal Health agreements. such agreements mean that our government has an arrangement to provide citizens of these signatory countries with essential treatment and, in return, these countries are obliged to provide the same to aussies when travelling. these countries include new Zealand, the united Kingdom, ireland, italy, finland, sweden, and belgium. the same applies in the netherlands, although you need to apply for an eligibility form before you travel if you are thinking you may require medical assistance there. n carrying treatments through customs can be another worry for plHiV. 1. always carry your prescriptions and a doctor’s letter with you. the doctor’s letter should contain the words, “these medications have been prescribed for a medical condition,” which is usually sufficient. 2. Keep the HiV medications in their original bottles and do not attempt to hide the containers. if you do, customs officials might think they are contraband. injectable medications must have the medication with them so as to justify bringing in empty syringes. 3. don’t advertise the fact that you are HiV-positive. even a red ribbon might attract the attention of some customs officials. 4. if you encounter problems, ask for a private screening to protect your confidentiality or ask for a supervisor. n When travelling with treatment, pack enough medications in your carry-on luggage so that you don't miss a dose. remember to adjust dosing for time-zone changes. take your prescriptions with you just in case you run out as overseas pharmacists may still fill a script for you if you do. n talk to your doctor about vaccinations and prophylactic medications if you are travelling to areas where malaria, yellow fever or other bugs are prevalent. people with HiV should not take live vaccines such as those offered by some clinics for yellow fever. don't let any of the above put you off travelling. travel can do wonders for your health and wellbeing. Just plan a little beforehand, check your insurance, and make sure to research some of the policies of the countries you plan to visit. bon voyage!

armistead Maupin with “wonderful husband” chris taylor

TELLINGTALES the castro was the epicentre of gay life in america in the late 1970s


Armistead Maupin, chronicler of gay life, feels lucky to be here. The veteran author spoke to Steven Petrow about 70s San Francisco, AIDS and ageing.


alking through San Francisco’s Castro district with Armistead Maupin today is like taking a stroll with the patron saint of the gays — which in many ways he is. The Castro was the epicentre of gay life in America in the late 1970s, when Maupin introduced his newspaper column, Tales of the City, set in and around these streets and chronicling gay (as well as lesbian and transgender) life for a mainstream audience. Now 73, his storytelling and life are still relevant: He recently was the subject of a documentary, The Untold Tales of Armistead Maupin, and Netflix is planning to revive the Tales of the City television miniseries that aired in the 1990s, with Maupin as an executive producer of the new episodes. Maupin has also written a new book, Logical Family: A Memoir, which traces his journey from his biological family to what he calls his logical one, “where you feel safe and where you’re loved unconditionally”. Q: in your memoir, you talk about ageing — and not kindly. You write that you are slower now, lazy more often than not, and plagued by grumpiness, what you jokingly refer to as “senile resentments”, a phrase your friend and fellow author christopher isherwood often used. How are you dealing with being older? A: Every now and then it jolts me that I’m 73. I have noticed the memory loss. I can’t always retrieve names, and I’ll embarrass a whole party by saying, “You know, that woman who was in something or other with somebody you know.” The worst thing wrong with me is that I have diabetes, so I have neuropathy in my feet, and that makes it harder to walk. I find myself walking around like an old man — sometimes to my great alarm. But I walk. Q: that sounds a bit defiant: “but i walk.” are you raging against ageing? A: No, not at all. I consider myself

extremely lucky that I am ageing. I’m lucky to be here. Q: Many of your generation succumbed to aids — not making it to old age. Have you ever been plagued by what’s called survivor’s guilt? A: No. But I try to live my life for them. I try not to exercise my senile resentments to their full glory precisely because they never got to make the journey with me. I feel very blessed, but not guilty. Q: did you fear that you would die back then? A: I’ve always had a fear of death, to a certain degree. It didn’t take AIDS to bring that out in me. Anybody with a lick of sense knows that we don’t get all the time on the planet that we want. But that was a time when we all thought we were going to get sick and die. Q: You write in Logical Family that your writing doesn’t come as easily to you now as in the past. A: When I started writing Tales, I had to write 800 words a day, come hell or high water. I was a columnist and couldn’t fret over the fact that each column wasn’t the best thing I’d ever written. Now I can take my time — I’m as pokey as hell. At best I can write a page a day, and I’m now a terrible procrastinator filled with self-doubt half the time. Q: is this because you’re older? A: I don’t think so. It’s because I’m my own best critic. Writing has become an increasingly agonising problem for me, but I think that has more to do with perfectionism setting in than ageing — or anything else. I want the language to be pretty, and that takes a while. Q: Why did you become a writer in the first place? A: From a very early age it was my instinct to be a storyteller. I was the kid who sat everybody down around the campfire and told them ghost stories about North Carolina, stories that I

dramatised for my own use after I read a book called Tar Heel Ghosts. And I had a great English teacher in high school who made me feel wonderful about myself because I could write. Later, I realised I could fix things by writing. I could tell the story of something painful and give it harmony and purpose. Most of life is chaos, and the job of a writer is to sort things out in some way — maybe not with a happy ending, but at least show a pattern. That’s always been useful to me. I’ve written in the midst of painful breakups. I wrote about AIDS when it was just hitting us. Q: do you think Tales helped to normalise homosexuality in this country?

day be the source of my greatest joy, the inspiration for my life’s work?” A: Growing up in North Carolina, being gay was unthinkable. As a child, I would see the word “homosexual” on a page and it would seem to be burned there — it would leap out at me. It was the one thing I was trying to avoid. My mother was afraid it was going to ruin my career. I finally said to her, “It is my career.” Q: You started writing Tales only a few years before HiV/aids was understood to be a killer disease. How did the epidemic impact your work? A: I lost a dear friend to pneumocystis pneumonia in

happening all around me. I’ve lost so many friends from that period. But one of the wonderful things about being an old queer is that most of your friends are people who’ve been out for a long time and showed a certain amount of bravery in doing what they did when they did it. I feel like an old pioneer with the other old pioneers. Q: How did you escape becoming infected with HiV? A: By being boring in bed. I didn’t discover the pleasures of other kinds of sex until later in life — which brings us full circle to my wonderful husband. Chris [Turner] is HIV-positive and very open about it. He [tested positive for HIV] not long before we met. In the documentary, they didn’t say anything about Chris being positive, and Chris said, “I don’t want that, I don’t want to look like I’m hiding it.” It was that kind of character that made me realise I’d met the right guy. [In a subsequent interview Turner said he takes medicines to manage his condition and that the couple is “very conscious of being safe since Armistead is HIV-negative”.]

Q: looking back, do you think you’re lucky? A: I think I’m very lucky — and privileged. I’m happy that I’ve been out [as a gay person] for so long, officially riGHt first edition cover of Tales of the City since the 1970s, and I think that left the ninth and final in the Tales series the gay experience can make you into a better person. I don’t spend a lot of time arguing that we’re as A: Yes, I think it did, and it paved 1982. He was one of the first good as straight people because, the way for a whole lot of things people to die of the disease that truth be known, I think we’re on television. People began to came to be known as AIDS. And better than many of them, realise how benign and beautiful then everyone around me started because of what we’ve had to gay relationships could be in the to die. We thought we were all endure, because of the ways in context of art. I do think that’s going to die. I could contain it in which we had to learn my chief contribution to the my head if I wrote about it. So I world. killed off a character from Tales of compassion. It makes us more open and intuitive. But you have the City and showed how the cast to earn it. You have to remain Q: despite setbacks, recent reacted to it. I was criticised by kind. And open. advances for lGbt equality have gay people, who wrote to say, been remarkable. You wrote in “Why are you doing this? This is the memoir: “How could i have This article originally appeared in supposed to be my light morning guessed then that the thing i The Washington Post and can be entertainment.” But I had to put feared most in my life would one viewed here. it in the story because it was

When I started writing Tales, I had to write 800 words a day, come hell or high water. ARMISTEAD MAUPIN

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“My name is duane Kearns puryear. i was born on december 20, 1964. i was diagnosed with aids on september 7, 1987 at 4.45pm. i was 22 years old. sometimes it makes me very sad. i made this panel myself. if you are reading it i am dead . . .” You can only begin to imagine what that young man — just starting out in life — would’ve been feeling as he carefully sewed black letters onto white cloth, fully realising he was creating his own epitaph. His is just one of the 50,000 panels that make up the NAMES Project AIDS Memorial Quilt. Just as the person they immortalise, no one panel is the same. Each captures the uniqueness of the person lost to AIDS, bringing humanity to a statistic. The AIDS quilt was the brainchild of San Francisco gay rights activist Cleve Jones. While

Jones was organising an annual candlelight march to honour slain San Francisco mayor Harvey Milk, the curly-haired, bespectacled 31-year-old decided to also honour those who had died of AIDS. It was 1985 and, by then, more than 1,000 San Franciscans had succumbed to the disease. “I remember looking around and grasping for the first time that, of those thousand, virtually every one of them had lived and died within six blocks of where I was standing — and there was no evidence of it,” says Jones. And so Jones — portrayed by actor Emile Hirsch in the Oscarwinning film Milk — asked marchers to write the names of friends and loved ones on placards to be carried through the streets of the Castro. “People were ashamed to do it,” says Jones. “They would put initials or just the first name. Finally, one guy took two pieces of paper, taped

them together, and in big block letters wrote, ‘Thomas J. Farnsworth Jr, my brother — he’s dead’.” At the end of the march, the placards were taped to the wall of a government building. “I got to the edge of the crowd, and I looked back at that patchwork of names on the wall and I thought, it looks like a quilt,” he says. Inspired by the sight, Jones and friends came up with the idea of the AIDS Memorial Quilt. “Joseph and I made a list of 40 men we felt we had known well enough to memorialise and began painting their names on three-bysix-foot blocks of fabric . . . the approximate size of a grave,” says Jones. Activists in other US cities decimated by AIDS — New York, Los Angeles and Atlanta — took to the project immediately. Before long, the quilt featured 1,920 panels and was the size of a football field. From the start, Jones had a

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definite idea as to where the quilt would be put on display. “I could see it so clearly in my head,” he says. “The Mall, covered in fabric, stretching from the Capitol to the Washington Monument.” On October 11, 1987, Jones’s vision came to fruition and the quilt was displayed for the first time on the National Mall in Washington DC during a march for gay rights. “Later that day, fellow organiser Mike Smith and I stood in a cherry picker 20 feet above the ground and watched as people made their way along the quilt panels,” says Jones. “Only the reading of the names and the sound of people weeping broke the silence. We were exhausted and overwhelmed by the beauty of the quilt and the horror it represented.” The quilt provoked an astounding response. Across America people began to sew. “New panels arrived in the mail

H IN TIME every day along with letters from throughout the United States and the world, many of them asking us to bring the quilt to their communities,” says Jones. A fourmonth, 20-city tour of America followed. As the quilt moved from city to city, more panels were added. “I imagined families sharing stories of their loved ones as they cut and sewed the fabric,” says Jones. “It could be therapy, I hoped, for a community that was increasingly paralysed by grief and rage.” As well as a therapeutic tool, the quilt also became a powerful symbol of protest “to shame [the government] with stark visual evidence of the utter failure to respond to the suffering and death that spread and increased with every passing day.” Tragically — at roughly 1.3 million square feet and weighing 54 tons — the AIDS quilt has grown to such an extent over the years that it can no longer be

physically displayed in its entirety in one place. New panels for the quilt still arrive on a daily basis; a reminder that AIDS is as real today as 30 years ago. In that time, the story of the quilt has been the subject of countless books, scholarly papers, articles, theatrical and musical productions, and an Oscarwinning film. The AIDS Memorial Quilt is the largest community art project in the world, an icon of the epidemic, and an international conduit for grief. And that, says Jones, was its original purpose all along. “I was just overwhelmed by the need to find a way for us to grieve together for loved ones who had died so horribly, and also to try to find the weapon that would break through the stupidity and the bigotry and all of the cruel indifference that even today hampers our response.” View the quilt here

An Australian tapestry

there are 37 quilt projects worldwide. launched in 1988, the australian aids Memorial Quilt remains the largest outside the usa. A large proportion of the quilt (97 blocks — each block containing eight panels) is housed in Castle Hill, Sydney, at the Powerhouse Discovery Centre. There, a team of volunteers painstakingly record information about the people memorialised, and the friends and family who created the panels. “Working with the quilt has filled me with lots of different emotions,” says Douglas Knox, former convener of the Australian quilt. “There's some sort of connection for me with

a volunteer shows visitors a portion of the australian aids Quilt the person commemorated, even though I didn't know them personally. You can tell so much about a person's life from each panel.” Other parts of the

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Australian AIDS Memorial Quilt are held by independent organisations in Melbourne, Adelaide, Perth, Darwin, Brisbane and Newcastle.


explaining the effect HIV has on particular parts of the body

Taking care of the ticker diabetes can be lessened through various lifestyle measures including healthy eating, weight control and smoking cessation. In more serious cases insulin therapy may be recommended.

As people living with HIV get older and live longer, they become vulnerable to all the complications of ageing — including cardiovascular disease. Cardiovascular disease (CVD) is an umbrella term that refers to conditions that can negatively affect heart health. The main types of CVD in Australia are coronary heart disease, stroke and heart failure. Several large international studies have shown that people with HIV are one-and-a-half to two times more at risk of CVD than HIV-negative people. Indeed, CVD is now perhaps one of the most common causes of death for people with HIV. As awareness of the increasing problem of cardiovascular disease has grown, many doctors now have an important secondary goal in HIV management: to try to reduce the risk of CVD in people with HIV. While trying to understand what might be driving this elevated risk, researchers have reached a number of conclusions. Firstly, changes in blood lipids (fats) are associated with antiretroviral treatments, increasing the risk of cardiovascular disease. This risk has been well studied and doctors are now able to keep patients off these drugs if necessary. Secondly, many of the risks associated with CVD in the general population — such as smoking, elevated cholesterol or hypertension (high blood pressure) — are more widespread among people with HIV. Thirdly, HIV itself seems to play a role in elevating cardiovascular risk. It is clear from studies that, when compared to people on HIV treatment, those who are not have an increased risk of heart disease. Even among people on treatment, the prospect of CVD is still elevated. The reasons for this are not entirely clear but some

Smoking Smoking is a major risk for CVd and can also exacerbate many of the other risk factors already mentioned. The benefits of quitting are widely known and support is available to quit from doctors and HIV organisations.

Depression Psycho-social factors such as depression are now recognised as independent risks for CVd. Allowing depression to go untreated can be both emotionally and physically damaging. A combination of counselling and antidepressant medication seems to work best for most people with depression. Talk to your doctor about the options.

researchers have speculated that even very low levels of viral activity — below what can be detected — may induce an inflammatory immune response that, over many years, can exacerbate such conditions as hardening of the arteries. However, trials have found that antiretroviral treatment generally protects against cardiovascular disease, with more heart attacks recorded among those who delayed or stopped treatment than those who started and stayed on treatment. There are two main categories for major risks of CVD: those we can’t control and those we can. Among those factors out of our control are genetics; some families are just more predisposed toward CVD than others. Both gender and age also strongly influence heart health. Generally, men have a greater risk of CVD than women, and at an earlier age. For men, risk begins to increase from 45 years on, for

women it’s 55-plus. The risks that we can control are abdominal obesity, elevated cholesterol, hypertension (high blood pressure), diabetes, smoking and depression. This seems like a daunting list, but the fact we can act to reduce these risk factors is good news.

THE RISKS Abdominal obesity Carrying extra weight around the gut is more of a risk for CVd than carrying it elsewhere. unfortunately, this is a particular problem for men, who typically put on abdominal weight as they age. It’s recommended that men try to keep their waist circumference below 94cm and women below 80cm. Another way to think about weight is using the Body mass Index (BmI), which should be between 18 and 25. To work out your BmI, use this calculator.

Elevated cholesterol If your cholesterol is high, there are a number of strategies available. A healthy diet low in saturated fats is a good start and fish oil capsules have also shown to be a benefit. For some people, drugs called statins may be prescribed to lower cholesterol.

Hypertension Blood pressure, when elevated, places stress on the heart, and the arteries that supply blood to the heart. Over time, this increases the risk of heart attack. reducing salt in your diet is a good way to start controlling blood pressure as is maintaining a healthy weight, taking regular exercise and limiting alcohol consumption. If these things don’t lead to a reduction then medications are available.

Diabetes diabetes is intolerance to sugar in the blood and is diagnosed through a blood test.

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In looking at these different risks and thinking about how to address them it’s important to know one thing: cardiovascular risks multiply one another, they don’t just add to each other. That means that if you have three or more risks, your total risk of CVD is exponentially higher than if you have only one. That’s the bad news; the better news is that by addressing one or two factors you’ll significantly reduce your total risk. What works for most people and tends to be sustainable are small regular steps in the right direction rather than a dramatic change of diet or an extreme exercise regime. Likewise with smoking, using nicotine replacement therapy for several months is more likely to succeed than going cold turkey. Last but not least, if you are over 40 make sure you get a CVD risk assessment from your doctor. (Or you can use this handy online tool.) Knowing your level of risk is the first step towards reducing cardiovascular disease.

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Is anal cancer on your radar? if you’re HiV-positive and have regular anal sex, you might be due for an anal cancer screen. While anal cancer is relatively rare in the general population, the incidence of anal cancer in people living with HiV (plHiV) is higher than usual. In fact, HIV-positive gay men have about 100 times the risk of anal cancer compared to the general population. While anal cancer can affect people of all ages, it’s more common in people 50-plus. Women living with HIV have about 15 times the risk of anal cancer compared with the general female population. And women who have had an abnormal pap screen or a precancerous cervical lesion have about five times the risk of anal cancer compared with the general female population. There are many factors that can increase your risk of anal cancer, but the biggest of all is the sexually transmitted human papillomavirus (HPV). It’s estimated that most sexuallyactive men and women will get

at least one type of HPV strain at some point in their lives. Because PlHIV sometimes have compromised immune systems, we can be more likely to develop the cancers that are associated with HPV — including throat, cervical, vaginal, penile and rectal cancers. What can we do to protect ourselves and our anal health? Talk with your doctor about getting the HPV vaccine (Gardasil). It’s important for both women and men to get vaccinated as it can prevent the types of HPV that cause cancer. While it’s ideal to get vaccinated

before becoming sexually active, the vaccine can still be effective in preventing cancer even for sexually active people. It’s very safe and effective, with no

serious side effects. It can also help protect from reinfection or against strains you haven’t already been exposed to. There is currently no test to detect HPV but there is increasing evidence of the benefits from adding a yearly digital anorectal examination (dArE) or an anal pap smear into your routine HIV care. (A dArE is a brief painless examination of your anus with a finger by your doctor to screen for any anal abnormalities.) Our chances of overcoming anal cancer are significantly higher the earlier we catch any lumps,

lesions or abnormalities. Early diagnosis is the goal, so never ignore any changes you might notice, including bleeding, sores, or pains in your arse. Not all doctors are familiar with HPV or anal cancer concerns as they relate to PlHIV, so when you raise the subject with them they might take a little time to get up to speed on the topic. As someone you trust to monitor your health, your doctor must be someone who takes your concerns seriously. So as we live with HIV, let’s manage our health from the driver’s seat, and include new ways to stay well and healthy for longer. l Positive life has an online factsheet with suggestions to stay on top of your anal health. If you want to talk to someone about a dArE or need support about any concerns, give Positive life a call on (02) 9206 2177 during office hours to speak to a peer living with HIV. We’ve all been there, and it’s not something you have to go through alone.


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Introducing our first female president living positive Victoria is delighted to announce christabel Millar as the new president of the organisation. Her appointment makes her the youngest and the first female to govern the organisation in this role. “living Positive Victoria is where I first began my engagement in the HIV community,” said millar. “To represent the organisation that has strengthened my resilience as an HIV-positive person and allowed me to stand up for what I believe in is an extraordinary privilege.” millar has served as a director on the living Positive Victoria board for the past three years. Her commitment to the HIV sector is far reaching: she’s participated in local and international initiatives, including speaking at the 2017

International AIdS Candlelight memorial; being a National Association of People with HIV Australia delegate to the Australian Federation of AIdS Organisation; a graduate of the Positive leadership development Institute; and, most recently, the Health Promotion and Communications Coordinator for Positive Women Victoria. “I’ve been fortunate to learn from, and work alongside, incredibly passionate people. It’s an exciting time in the HIV sector and I’m looking forward to working with my peers, colleagues and the HIV community,” said millar. Acting CEO Suzy malhotra is confident about

“I’ve been fortunate to learn from, and work alongside, incredibly passionate people. It’s an exciting time in the HIV sector and I’m looking forward to working with my peers, colleagues and the HIV community.”

the direction that Christabel will take the organisation into the future. “Christabel’s commitment to this organisation and the HIV community has been second to none. She has an innate sense of social justice and understands the importance of addressing HIV stigma, building resilience, and strengthening the community. We are thrilled to have her as the president of our organisation.” millar will lead a board of up to nine individuals that aim to represent the diversity of people living with HIV across age, gender, ethnicity and sexuality. Those interested in bringing their skills to the Victorian HIV response can email lYou can follow Christabel on facebook or email her at president@livingpositivevictoria.

Closing the gaps living positive Victoria and positive Women Victoria are proud recipients of a positive action community Grant (pacG) from ViiV Healthcare that will support them to respond to issues facing people living with HiV (plHiV) and to help reduce the impact of HiV in australia. living Positive Victoria will use its grant to pilot a peer liaison officer who will work in four high HIV caseload clinics across melbourne. The liaison officer will be on hand to provide support to newly diagnosed individuals and to address gaps in care. “The immediacy of peer

contact for people newly diagnosed with HIV cannot be understated, not only providing support for the individual at a crucial time, but increasing the likelihood of PlHIV remaining in care and not being lost in follow up,” said Suzy malhotra, Acting CEO living Positive Victoria. “Our PACG grant will go a long way in supporting us to improve treatment outcomes for PlHIV in Victoria.”

It’s anticipated the liaison officer will be in place early in the new year. meanwhile, Positive Women Victoria will lead a qualitative research project to improve sector-wide understanding of

PlHIV from culturally and linguistically diverse (CAld) backgrounds — specifically African-born women. Approximately 50 percent of women recently diagnosed with HIV in Australia come from CAld backgrounds, with a large percentage (13.7 per 100,000) from Sub-Saharan Africa. “We’ve identified African-born women as a hard-to-reach group and we know that there is a gap

in the sector’s understanding of the needs of these women,” said Alison Boughey, Chief Executive Officer at Positive Women. “With the support of PACG, we’re implementing research to improve understanding of their needs and we hope to see this lead to positive outcomes for these women, including earlier linkage to testing and care services, a reduction in stigma and discrimination, and improvement in their quality of life.” more information about the 2017 PACG programs can be found here.

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SAyIng IT STrAIgHT THEy ArE ALL-Too-ofTEn THE forgoTTEn mInorITy: HETEroSExuAL mEn LIVIng wITH HIV JOHN Stigma, I’ve heard that word so many times since diagnosis, but the only time I have experienced it is my own personal stigma. I had to battle my own ignorance and educate myself. I suppose it probably stemmed from the information I was given in the 1980s regarding HIV and AIdS. Although I knew I had never done anything homosexually, I’d always thought it was a homosexual disease. And I have never injected myself either. So I was neither of these and so it was supposed to be impossible for me to catch [HIV] — that was the information I had been given in the ’80s.

TOM I often get asked what it’s like to be living as a heterosexual male with HIV. And of course there are the inevitable questions. Have you been with a man? Was the woman from Africa? Have you injected drugs? In short: no, no and no. I had sex without a condom, got unlucky, and caught HIV. I spent the first few weeks in denial. This couldn’t happen to me — I was straight! Yes, I had unprotected sex, but only a couple of times. I refused to accept that I could catch HIV. I guess there is no real education about HIV in the straight world. I decided to go on meds early as that

was my way of having some control over the virus. Taking that first pill was a massive deal, but now I don’t even think about it. Within a month I was kicking the virus into check, with my Cd4 going up and an undetectable viral load. Back in 2012 I thought my world had ended, but now I see a future again where I can achieve all of my dreams and there is nothing that can hold me back. Yes, I have this little virus living inside of me but it lives on my terms and conditions, and doesn’t control me anymore. In some ways [HIV] has made my life richer and has made me a better person.

MARK I’m a white straight man. I have amassed more than my share of unearned privilege in our society, so I’m not going to take on the role of the marginalised one. At the same time, yes — it is harder for us. Support groups almost never exist. We also don’t have a sense of community like the gay community. When I disclose my status, I wait about five seconds and begin to answer the question I know is coming: “How did you get it?” Then you can usually tell what the other person is thinking. It’s only a few seconds, but it’s always there — the incredulity space, the judgment zone. It took me about five years to come to grips with living with HIV. When I was diagnosed, they told me I probably had

three to five years to live. After a fog of depression and bouts of self-destruction, I slowly started to give back to the programs that helped me out. I began working in HIV. From my first days as a volunteer, I knew that the best thing I could do with whatever time I had left was to become an advocate and activist.

JOSH One of the main issues is the lack of awareness and support. There are very few HIV campaigns geared towards the heterosexual community. many campaigns still perpetuate the stigma that this is only a gay disease to the point where straight people feel they are in no danger. Though the risks are smaller for heterosexuals and [HIV] is harder to contract, a risk still exists — HIV/AIdS can affect us all. many in the straight community do not know their status and are never referred to get an HIV test by a doctor due to the fact they are not “high risk”. The push to get tested and know your status is a good one; however, it should be equally shared with everyone — regardless of sexual orientation. In order for us to reach zero [transmissions] we need to look at every avenue we can take to reach this goal. This is one reason that I am so out about my positive status because I want straight people to know that HIV can happen to

them as well. regardless of sexual orientation, we are all brothers and sisters fighting this battle — and we need to be in this together.

EDWARD The main challenge is stigma — as a straight man there is always that extra aura of disbelief around my “real” sexual preferences or experiences. I was an injecting drug user who shared needles with a woman who must have been HIVpositive. I didn’t want anyone to know. Not even my family, let alone trying to have a relationship with a straight and HiVwoman. The fear of positive? for advice rejection stayed with me and support, for a long time. contact pozhet in Heterosexual men living nsW or straight with HIV are a population arrows in Victoria in this epidemic that needs to be counted, serviced and allowed to give input to help end the epidemic. It’s really hard when you feel there is nowhere for you to fit in, but you still have HIV. There ought to be inclusion in research and studies to track the trauma connected to heterosexual men living with HIV as well as identify the service gaps. At the grassroots level we need to come together to alleviate internal stigma by supporting and holding each other up, and address the external stigma by being visible and developing ourselves as community educators and public speakers.

The main challenge is stigma — as a straight man there is always that extra aura of disbelief around my “real” sexual preferences or experiences. I was an injection drug user who shared needles with a woman who must have been HIV-positive. positiveliving l 15 l SummEr 2017-2018



Life’s a peach for remembering pill time 1 tag treatment time to things you already do each day, such as brushing your teeth or eating a meal

2 try a weekly or monthly pill box with compartments for each day of the week to help you remember whether or not you took your meds that day

3 set a pill time alarm on your clock, watch or phone as a reminder to take your pills

4 Download the free mylife+ app on your smartphone and set up reminders to easily track your pill taking

5 Ask a family member or friend to help you remember to take your medicine

originally sourced to china, peaches have been around for a millennial or more. they are a member of the stone-fruit family (known as ‘drupes’) along with apricots, cherries, plums and nectarines. fuzzy on the outside and juicy on the inside, peaches are packed with vitamins and minerals that help the body fight free radicals. they’re high in antioxidants and have anti-inflammatory properties. peaches contain vitamins a and c, and are an excellent source of fibre. they’re good for the gut, the heart, the skin and the eyes. a ‘climacteric’ fruit, peaches continue to ripen after they’re picked. once ripe, they last about a week at room temperature. now in the peak of their season, peaches are immensely adaptable and can be used in salads, smoothies, ice creams, puddings and pies.

Cool as a cucumber

so, cucumbers — vegetable or fruit? Would it surprise you to discover that they’re both? they’re a vegetable fruit. no, really. While cucumbers are botanically a fruit, in the culinary world they’re treated as a vegetable. What can’t be disputed is that cucumbers possess an impressive array of health benefits. they detoxify, cleanse and lower lipids. cucumbers act as a coolant and help the body to stay hydrated. they’re defenders against free radical damage and inflammation. and they relieve oxidative stress. cucumbers are linked to heart health and are good for the bones. When applied to the skin, cucumber slices help ease irritation and reduce swelling. oh, and they can be eaten too! cucumbers are perfect in salads and appetisers. look for the lebanese ones, which with their thinner skins are often more appealing! positiveliving l 16 l SummEr 2017-2018

QUOTEUNQUOTE Australia finds itself with the opportunity to end HIV transmission. Australia should be proud that what brings her to this point is a triple combination strategy of courage, compassion and compromise, driven by the very people whose lives are most disrupted and traumatised by the virus. Elton John


76million people have become infected with HIV since the start of the epidemic; in that time,

35million people have died from AIDS-related illnesses

Positive Living Summer 2017-2018  
Positive Living Summer 2017-2018  

Published by the National Association of People with HIV Australia, Positive Living is a digital magazine for people living with and affecte...