Positive Living Summer 2015-2016

positiveliving FOR PEOPLE LIVING WITH AND AFFECTED BY HIV | SUMMER 2015-2016

BURNING

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“Oh you have HIV…I’m not ready for that kind of complication in my life,” said the guy on Grindr. Tom Knight replied with a perfect slapdown.

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Mothers, sisters and daughters Four HIV-positive women share their stories. PAGES 8-9

CRUNCHINGKIRBY: WHEN THE WORLD WOKE UP TO AIDS The death of Hollywood screen idol

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positiveliving Issn 1033-1788 EdIToR Christopher Kelly

david menadue vicky fisher ConTRIbuToRs bridget haire, Jake Kendall, dr louise owen, sue smethurst, patrick strudwick dEsIgn stevie bee design assoCIaTE EdIToR pRoofREadER

CovER ImagE XX

REASONS WHY HIV INFECTION RATES AREN’T FALLING PAGE 7

What do the numbers in Australia’s latest annual HIV report mean? PAGE 6

When Martin Shkreli massively jacked up the price of an HIV drug, he became

Pharma greed’s poster boy

Rock Hudson 30 years ago marked a seminal moment in AIDS history.

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thepillbox PAGE 10

what’syourproblem?

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What if I give my man HIV?

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Contact the Editor EmaIl: christopher@napwha.org.au all correspondence to: Positive Living PO Box 917 Newtown NSW 2042 TEL: (02) 8568 0300 FREECALL: 1800 259 666 FAX: (02) 9565 4860 WEB: napwha.org.au Positive Living is published four times a year by the National Association of People With HIV Australia and is distributed with assistance from Gilead and ViiV Healthcare. Next edition: March 2016 subscriptions

n Positive Living is a magazine for all people living with hIv in australia. Contributions are welcomed, but inclusion is subject to editorial discretion and is not automatic. The deadline is 21 days before publication date. Receipt of manuscripts, letters, photographs or other materials will be understood to be permission to publish, unless the contrary is clearly indicated. n material in Positive Living does not necessarily reflect the opinion of napwha except where specifically indicated. any reference to any person, corporation or group should not be taken to imply anything about the actual conduct, health status or personality of that person, corporation or group. all material in Positive Living is copyright and may not be reproduced in any form without the prior permission of the publishers. n The content of Positive Living is not intended as a substitute for professional advice.

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thenews

WHo updates treatment guidelines Four months after the start study findings were released, the World Health organisation updated its treatment guidelines: it now recommends that people be given antiretroviral drugs immediately upon HiV diagnosis — regardless of cd4 count.

Previously, WHO guidelines

stated that treatment should be provided to people with CD4 counts of 500 or less. WHO also recommends that people at “substantial risk” of HIV infection should be offered preventative therapy (PrEP — preexposure prophylaxis).

“These new guidelines and

treatment revolution may be on the cards popping pills every day could be replaced with a twomonthly injection. in tests, the two-drug jab — containing cabotegravir and rilpivirine — was found to have comparable viral suppression rates to three daily pills.

If the “transformational” treatment approach is found to be equally as effective in larger final stage trials, the combination injection could be on the market by 2020. For many people living with HIV, treatment adherence can be a struggle and an injection every eight weeks would solve uptake mishaps. As well, it has the potential to combat drug resistance.

An injection could also be used as a preventative tool.

PrEP users currently take an anti-HIV pill once a day. Many people at risk of HIV find the daily regimen off-putting. A two-monthly injection may appear more appealing and could dramatically decrease the numbers of new infections.

recommendations are a highly significant moment in the AIDS response,” said UNAIDS executive director, Michel Sidibé.

“The medicines and scientific tools now at our disposal provide us with a real opportunity to save millions of lives over the coming years and to end the AIDS

and needed; they’re also feasible,” said Dr Unni Karunakara, international president of Doctors without Borders. “Countries should implement these new WHO guidelines and accelerate treatment without delay.”

Australia adopted a policy of treatment upon diagnosis last year.

epidemic by 2020.”

If the WHO’s ‘treat-all’ recommendations were to be implemented worldwide, it is estimated at least 21 million AIDS deaths and 28 million new infections could be averted by 2030. “These new treatment recommendations are ambitious,

nsw leads the way nsW residents living with HiV and hepatitis c are now getting their drugs for free.

The NSW government came good on an election commitment and scrapped the co-payment on s100 drugs, saving people $37.70 per script ($6.10 for concession card holders).

“People living with complex illnesses are suffering enough without the stress of having to fork out for essential but expensive medication,” said NSW health minister Jillian Skinner (AT RIGHT).

The move, which came into effect on 1 October, has been widely

praised. “We welcome the NSW government’s commitment to improved access to medications,” said Positive Life NSW CEO Craig Cooper. “Free HIV medicines are a win for people living with HIV and will make it easier for some people to start HIV treatment and stay on treatment.”

Aaron Cogle, executive director of the National Association of People with HIV Australia, said the change will not only benefit the individual, but also the broader community.

“Usually within six months a person

on treatment will reach, or come close to, an undetectable viral load.

This means that the virus is suppressed and they can live a regular, healthy life. It also means that the risk of transmission is virtually impossible,” said Cogle.

“Removing the co-payment for HIV medications removes another barrier from people accessing the care they need and is to be welcomed.”

NSW is the first state to drop s100 co-payments; pressure will now be on other jurisdictions to follow suit.

opinion christopher kelly, editor

Fighting hysteria with facts “Fear and aids in Hollywood”; “shocking reason he hid aids”; “lover sues”.

Those headlines appeared 30 years ago when hollywood actor Rock hudson was forced to disclose he had been diagnosed hIv-positive (see page 11). he was the first internationally recognised celebrity to do so. last month, another hollywood actor felt compelled to share his positive status with the world after similar headlines appeared in the press. “hollywood hIv panic” screamed the uK Sun; “Charlie sheen aIds Cover-up” raged us gossip rag the National Enquirer.

The eighties were again echoed by the inference that, as with hudson, due to his “lifestyle” — the drugs, the

booze, the parties — sheen somehow deserved his diagnosis. “sex maniac Charlie sheen slept with transsexuals and men!” screeched the Enquirer. such sensationalistic, judgemental reporting feeds unnecessary fear in the community, which in turn further stigmatises people living with hIv. You only have to gaze at the comment threads online.

“You reap what you sow!!”; “If one wanted to be unkind [cue unkindness] it could be said [sheen’s hIv] is self-inflicted!!”; “Call a spade a spade [here we go]. with the sorts of lifestyle sheen leads, why should we be surprised!!!”; “living with hIv these days isn’t shameful [at last] but it should be!!! [oh, dear].”

many people expressed hurt and amazement at such hysterical headlines and ugly comments. a typical message I received read: “Isn’t it crap the shit being said re sheen and hIv.” Yes, it was crap and people spouted a lot of nonsense. but there was an upside to the sheen disclosure.

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for the first time in a long time, the focus was on all things hIv: it was wall-to-wall worldwide coverage. here was an opportunity to spell out the facts. positive people the world over were offered a platform to discuss the realities of living with hIv in the 21st century. for the first time, people learnt what it meant to have

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undetectable hIv — that with a suppressed viral load it is virtually impossible for a positive person to pass the virus on. people became aware that there is far greater risk engaging in condomless sex with someone of unknown status than with a positive person successfully managing their hIv. It was reported that the virus is largely spread by people unaware they have the disease. The message to test and start treatment upon diagnosis was spread far and wide. as the sheen saga inevitably rolls on, let’s hope more positive people are given a chance speak out and tell it like it is. It’s time people’s thinking about hIv was brought up to speed. after all, it’s 2015 not 1985 . . .

thenews

victoria to legalise medicinal cannabis Victoria is set to become the first jurisdiction in australia to legalise marijuana to treat chronic medical conditions such as HiV. Although the drug won’t be legal in smokable form, licensed cultivators and manufacturers will be allowed to produce oils, capsules, sprays and vapours.

Victorian residents will be able to buy the products at community pharmacies — but only with a prescription from a specialist doctor. “I’ve seen how medicinal cannabis can change people’s lives,” said Victorian premier Daniel Andrews. The move follows a report by the Victorian Law Reform Commission that recommended

medicinal marijuana be made available to treat five serious conditions: multiple sclerosis, cancer, chronic pain, epilepsy and HIV/AIDS. In order for the Victorian scheme to proceed, and to ensure Australia is not in breach of international drugs treaties, the federal government is to amend the Narcotic Drugs Act so that cannabis can be legally grown for medicine or science.

HiV pioneer retires More than 30 years after identifying HiV, Françoise barrésinoussi is retiring.

While disappointed that a cure remains elusive, the scientific pioneer nevertheless is proud that — with treatment — the virus at least can be kept under control. “I would love to have [retired] and to see we had a vaccine against HIV — but that’s life. I encourage the new generation of scientists today to continue our work.”

Together with her former mentor at the Pasteur Institute in Paris, Luc Montagnier, BarréSinoussi received a Nobel Prize in Medicine in 2008 for codiscovering the human immunodeficiency virus in 1983.

Of that time, Barré-Sinoussi remembers AIDS patients arriving at the Pasteur pleading for treatment. At the time there wasn’t any. “It was very, very hard,” said Barré-Sinoussi.

While conceding a cure is

unlikely to be found in her lifetime, the 68-year-old remains optimistic that remission is definitely within reach (BarréSinoussi is referring to patients who have come off treatment and still maintained undetectable levels of HIV). “I am personally convinced that remission is achievable. When? I don’t know.

But it is feasible,” she said. “We have proof of concept.”

Barré-Sinoussi believes that the scientific successes over the years are due to a collaborative response to the disease. “HIV has shown the way to go in the field of science. You can’t be isolated in your laboratory. You need to work with others.”

tasp lessening transmission fears treatment as prevention, or tasp, is transforming the lives of people in poz-neg (serodiscordant) relationships by easing anxieties about transmission, says an australian study.

“It helps you to be able to relax and enjoy your sex life, enjoy your relationship with your partner,” said a participant. “It’s one less thing to worry about.”

The study has found attitudes toward TasP shifting significantly in recent years. When social anthropologist Asha Persson of UNSW Australia first researched the subject in 2009, respondents expressed scepticism that treatment could drastically reduce

the risk of HIV transmission.

Over the years, studies such as HPTN 052 and the more recent PARTNER trial have proven the effectiveness of TasP — findings that have helped change people’s

perceptions about HIV. “TasP makes possible new ways to experience and imagine serodiscordant sexuality,” said Persson. “Serodiscordant relationships are something that can be ‘worked through’ and then enjoyed, instead of being problematised as an anomaly in need of continuous sexual risk management.”

Today, serodiscordant couples display far more awareness of the health benefits of TasP. While not all respondents were familiar with the term, they knew treatment reduced viral load, making onward transmission virtually impossible.

prEp sTudY

Zero transmissions

a us study has shown prep to be 100 percent effective in preventing HiV transmission.

Over two-and-a-half years, researchers in San Francisco studied 657 people on a preexposure prophylaxis treatment plan — not one of them developed HIV during the course of the trial.

“Our study is the first to extend the understanding of the use of PrEP in a real-world setting and suggests that the treatment may prevent new HIV infections

even in a high-risk setting,” reported Dr Jonathan Volk at Kaiser Permanente Medical Centre. “Until now, evidence

supporting the efficacy of PrEP to prevent HIV infection had come from clinical trials and a demonstration project.”

Made up of predominately gay men, the observational study found condom use was unchanged in 56 percent of cases, but decreased among 41 percent.

At 12 months, 50 percent of participants had been diagnosed with an STI, reinforcing the need for ongoing regular screening of people on PrEP.

New website for newly diagnosed a new website for people recently diagnosed with HiV launched on World aids day. based on an afao/napwha booklet of the same name, next steps covers a range of topics including information on hIv, adapting to life at different stages following a diagnosis, monitoring how hIv is progressing, and treatment — including when best to consider initiation. as well, the website addresses issues such as disclosure, sex, having children, rights and obligations, and where to seek support. next steps is also for positive people wanting to revisit information relating to their hIv diagnosis, particularly given recent changes in the understanding of antiretroviral treatments such as the health benefits of early treatment initiation, the use of treatment as prevention (Tasp) and pre-exposure prophylaxis (prEp). go to: hivnextsteps.org.au

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thenews for people to cope with stigma: “While we continue to paint people living with HIV as lesser or flawed, people in those circumstances tend to scout out escape and crystal can provide escapism.”

PrEP the four letters on everyone’s lips this year were p.r.e.p — prep (pre-exposure prophylaxis). And this year the acronym entered the mainstream with many of Australia’s major mastheads reporting PrEP’s effectiveness at protecting against HIV. In May, ABC TV aired a report on its real-world use among gay men in Melbourne. These men were either enrolled in a clinical trial or accessing PrEP through

private prescription because, as yet, the PrEP drug — Truvada — remains unlicensed in Australia as a preventative medicine.

(Truvada is currently before the Therapeutic Goods Administration for approval as PrEP; there is unlikely to be a response until mid-2016.)

A video campaign — #approvePrEPdownunder — urged for PrEP to be approved as quickly as possible and for Truvada to be placed on the Pharmaceutical Benefits Scheme. The film clip featured various advocates for access, including Melbourne radio personality Dean Beck.

“Whilst my recent positive diagnosis means it is too late for me,” he says, “it is essential that all men who have sex with men wanting PrEP should have it.”

As well as the PrEP trial in Victoria, two others got underway this year — in Queensland and NSW. Initial findings echo the results of overseas studies: no HIV infections recorded among the hundreds of participants involved.

In September, posters appeared on the streets of Melbourne declaring: “You can fuck raw.

PrEP works.” The activist group behind the campaign were accused of encouraging gay men to have condomless sex. “The reality,” said the group in a statement, “is that HIV will continue to be transmitted if we

DISPENSING

BURNING

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ISSUES As 2015 draws to a close, Christopher Kelly looks back at the year’s hot topics.

do not make PrEP fully accessible to Australians.”

While HIV orgs distanced themselves from the messaging, many agreed with the sentiment. “Gay men who are of high risk of HIV need PrEP and they must have PrEP as an option,” said Bridget Haire, president of AFAO (Australian Federation of AIDS Organisations). “Otherwise, HIV infections in Australia will not decline.”

ICE ice was hot this year.

Tony Abbott (remember him?) declared war on crystal meth and launched a national taskforce to combat the “deadly scourge” on Australian society. Predictably, members of the press got themselves in a lather and headlines such as “Ice epidemic!” screamed from the front pages of our news rags.

Positive Life NSW and the

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NSW Users and AIDS Association issued a statement criticising the media for its inflammatory language and blanketly labelling meth users ice-crazed psychotics: “These reports are not consistent with what we know around methamphetamine use,” it read.

“This public portrayal of users contributes to stigma-based barriers for people who may be seeking assistance and accessing support.”

It was reported that ice use was particularly prevalent among HIV-positive gay men. Brent Allan, president of Living Positive Victoria, said the drug was a way

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From 1 July, people living with HiV were given a choice as to where they collected their medication. For the first time, HIV treatment was dispensed from community chemists. The move was largely welcomed by the HIV community, with privacy fears quickly allayed. (According to a NSW study, 72 percent of PLHIV are happy to pick up their meds from their chemist.)

However, the community dispensing roll-out didn’t proceed without hiccups. Anecdotal reports suggested some pharmacists lacked basic knowledge of HIV, while others had problems sourcing treatments. As well, wholesalers complained that it was financially unviable to provide HIV drugs to small, regional pharmacies.

START in May, the start study generated global headlines when it was stopped 18 months ahead of schedule. The findings were indisputable: commencing treatment immediately after diagnosis greatly benefits individual health and helps prevent transmission of HIV to others. “There is no clinical reason to wait until you get to a certain CD4 count to treat anymore,” said START coordinator Professor Sean Emery.

Four months later, the World Health Organisation changed its treatment guidelines accordingly.

Having adopted a treatment upon diagnosis policy last year, Australia once again showed itself leading the way in the global response to HIV/AIDS.

y eyes are in a spin. I’ve the Kirby Institute’s Surveillance Report in front of me and there are dots and graphs and squiggles everywhere. And numbers, so many numbers.

Which is what you’d expect from a document examining the sexual health of the nation.

Published annually by UNSW Australia, the 145-page report covers HIV, viral hepatitis and sexually transmissible infections. I’m attempting to drill down the data on HIV.

M

So where to start? Well, first the bathroom cabinet for the eye drops, then the kitchen cupboard for the coffee. OK, the key finding of the report is that, overall, rates of new diagnoses in Australia have remained stable for the past three years: 2014 saw 1,081 new infections; 1,028 in 2013; 1,064 in 2012.

Good news, right? Well, yes and no. Numbers aren’t rising, but they’re not falling either (see opposite page). Aaron Cogle, executive director of NAPWHA (National Association of People with HIV Australia), said that while the trend was an improvement on a period of worrying rises in new infections, more must be done to bring rates down. “One thousand new diagnoses annually is just too high and we will have to do much better if Australia is going to meet the target set under the National HIV Strategy of achieving the virtual elimination of new HIV infections by 2020,” he said.

Scrutinising the state stats: NSW recorded the highest number of new infections last year (345), followed by Victoria (302), Queensland (246), WA (107), SA (39), ACT (18), Tasmania (15), and NT (9).

While NSW rates were highest, they were down from last year.

Falls also occurred in Victoria, SA, ACT and NT. Queensland and Tasmania experienced sizeable spikes; a rise was also recorded in WA. Gay men continue to be most affected (70 percent of cases presented in this group, compared to 19 percent attributed to heterosexuals), with condomless anal sex among men unaware of their HIV status a leading factor.

CrunChing KIRBY With a pot of strong coffee at his side, Jake Kendall dissects Australia’s annual hiV report.

Although the uptake of antiretroviral treatment (ART) varies across the country, the number of people living with HIV on treatment is increasing generally — around 73 percent are on ART. Encouraging news, said Positive Life NSW CEO Craig Cooper: “This report shows PLHIV are increasingly motivated to look after their own health by starting

treatment after diagnosis.”

Still, Australia is falling short of the 2020 90 percent target set

by UNAIDS. Clearly, more work needs to be done to achieve higher levels of treatment uptake around the country. “In particular, we must ensure that all PLHIV are aware of the START study findings,” said Cogle. “They give definitive evidence of the

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benefits of starting treatment immediately after diagnosis to maximise individual health and help prevent transmission of HIV to others.”

When it comes to treatment as prevention (where PLHIV on ART reach undetectable viral loads) we’re nailing it, with suppression being achieved by 92 percent of people on ART. “This compares

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well to the United Nations’ target of 90 percent of all people receiving ART achieving viral suppression by 2020,” said Cooper. “The report reinforces that PLHIV are active partners in their healthcare with treating doctors, ensuring the best health outcomes for themselves and the greatest protection for their partners.”

The Kirby Report also shows that more people than ever are testing for HIV — particularly men who have sex with men (MSM). Between 2011 and 2014, the number of MSM testing for HIV doubled to 26,000.

Increasing accessibility of rapid testing (at least in the country’s capitals) and the short wait time for results (around 20 minutes) are thought to be the cause of the upswing.

Other good news includes extremely low HIV infection rates among injecting drug users and sex workers. “This is a great achievement,” said Cogle. “The highly successful harm reduction approaches that underpin these successes must continue.”

Mother-to-child transmission rates are another Australian success story: among 242 women with HIV who have given birth in the period 2010-14, the transmission rate to newborns was 1.7 percent.

Not so good news when it comes to Aboriginal and Torres Strait Islander people: the HIV diagnoses rate has increased over the past five years. Although the number of new diagnoses in 2014 was relatively small (33), the report’s authors recommend “a strengthened focus on prevention in this vulnerable population”.

To sum up: Australia’s HIV epidemic continues to be predominately among MSM. Initiatives promoting testing and treatment uptake have achieved encouraging outcomes although the 2020 target has yet to be attained. However, when it comes to the number of PLHIV on treatment achieving viral suppression, Australia has kicked the ball over the bar.

So the news isn’t all bad; it’s not all good either. The general consensus seems to be that the Kirby Report is a mixed bag.

There’s much work to be proud of and many people deserve an endof-year slap on the back, but — if we’re to lead the way in ending HIV — we can’t slack off now.

Australia needs to increase the testing and treating while also adopting new technologies such as PrEP as quickly as possible.

5 As the Kirby report reVeAls, While hiV diAgnoses Aren’t inCreAsing, they’re not deCreAsing either.

BRIDGET HAIRE exAmines Why.

D

espite high-profile health promotion campaigns and a concerted effort to make antiretroviral therapy more accessible for people with HiV, the number of new HiV cases in australia has remained stubbornly stable over the last three years.

Although Australia has made some gains — more HIV-positive gay men are receiving treatment than ten years ago and the number disclosing their HIV status to partners has risen — for a number of reasons we’re not seeing a major decline in infections.

HiV is Very diFFerent noW HIV infection is now a treatable condition rather than a death sentence, and this is a very, very good thing. It means people who contract HIV today can expect to live nearnormal lifespans, as long as they adhere to standard treatment, a regimen of antiretroviral drugs.

The flip side of this good news is that, inevitably, HIV is now less scary. That hasn’t resulted in condom abandonment by the community at highest risk of infection in Australia — gay men and other men who have sex with men — but it does impact how

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Y H W S N O REAS S N O I T C E F N I V I H IN AUSTRALIA AREN’T FAL LING

they assess their risk of infection.

Research shows HIV is drastically less infectious if a person is taking suppressive antiretroviral therapy. The risk of getting HIV from having unprotected sex with an HIVpositive gay man on suppressive therapy is much lower than from condomless sex with a sexually active gay man who hasn’t been tested recently.

Assessing your risk of getting HIV is now far more complicated. pre-exposure preVention isn’t readily aVailable There’s a new form of HIV prevention called preexposure prophylaxis, or PrEP for short. A little like oral contraceptives, PrEP involves HIV-negative people at risk of infection taking a particular antiretroviral drug on an ongoing basis to prevent getting HIV. PrEP has been licensed in the United States since 2012, but not in Australia. Some people get it through so-called “implementation studies” (small studies that give access to a select, very high-risk group of people while collecting data), but there are only 450 places in these studies, even though there are many thousands of people in Australia at very high

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risk of HIV infection.

Australian gay men who understand they are at increased risk of HIV infection have had to resort to either paying around $13,500 a year or ordering generic versions of the antiretroviral drugs over the internet. This is legal, as long as the person making the order has a doctor’s prescription and is importing the drugs for personal use.

GettinG tested isn’t alWays easy Sexually active Australian gay men are expected to test for HIV at least once a year, even if they always use condoms. For men who have had any riskier practices, such as condomless sex, this rises to testing every three months.

This is a big ask. In order to make testing less logistically fraught, HIV community organisations have developed community-based rapid testing options. Rapid tests — particularly those in community settings — simplify the testing process, deliver a fast screening result and are open after business hours, so as not to disrupt work.

But rapid community-based testing is not yet available in every state and territory. Home-based testing — where people test

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themselves, making the process still more convenient — is available only through a clinical trial. it’s not easy to alWays use condoMs Condoms are a simple, relatively cheap, protective barrier that prevents HIV infection. But effective use of condoms requires ongoing, correct use every time there’s a risk of HIV transmission during sex.

This is difficult to sustain over a lifetime; the norm in heterosexual relationships, for instance, is to replace condoms with some form of hormonal contraception as relationships become longer term.

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Gay Men use condoMs MucH More tHan Heterosexuals Most gay men use condoms for high-risk sex most of the time.

When they don’t, they often use some other strategy to mitigate risk. In comparison, among heterosexual Australians aged between 16 and 69 who were sexually active, less than half reported using condoms in the last year.

What this means for an

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effective HIV response in Australia is that we need to listen to the voices of peer-based community organisations to understand what makes adherence to HIV prevention strategies difficult for those at highest risk of infection.

Simplified access to testing is critical, so that infections are picked up early and newly diagnosed people can commence treatment both for their own health and to reduce ongoing transmission. Wider access to PrEP is also critical, so that those who are aware that their condom use is less than perfect have another option to rely upon.

At the beginning of the HIV epidemic, gay men invented safer sex to protect themselves and their loved ones. Today, we need to listen to them to understand what makes risk reduction difficult, and which technologies are critical to the future of HIV prevention in this country. bridget haire is a lecturer in ethics, hIv prevention at unsw australia and president of the australian federation of aIds organisations (afao).

More than 2,700 Australian women are currently living with HIV. They are

Mothers, sisters and d&ughters and daughters Four of them share their stories with Sue Smethurst.

Abby Landy, 24 Abby Landy was deeply suspicious something was wrong when, at 23, she developed cold sores for the first time in her life. The busy law student went to see her GP, saying that coincidentally, she was so tired she could barely get out of bed. It was a week after she’d broken up with her boyfriend.

The GP dismissed Abby’s concerns but at her insistence, gave her a sexual health screening to be on the safe side — which she now knows does not include testing for HIV. The results were good, but Abby wasn’t getting any better, she could barely stand up and a mysterious rash was spreading over her body.

She took herself to a nearby hospital emergency department and was given a script for an antihistamine and told to go home. But her mind still wasn’t at ease. “I’ve never had a cold sore ever and I was just getting sicker and sicker.”

She called her ex-boyfriend, but far from reassuring her, when he said, “don’t worry babe, at least you’ll remember me forever,” she panicked. “I’d googled the symptoms, everything was pointing in the direction of HIV so I went back to my GP and insisted I have a test. She told me I was an Aussie girl, heterosexual, very low risk, not to worry. But when

the clinic called and asked me to come back in urgently, in my heart I knew. My GP was almost in tears when she told me I had HIV. My first thought was ‘I don’t want to live with this’.”

Abby put her studies on hold and moved back in with her family to focus on getting well, she researched the virus heavily and found support groups for women like her, who offered companionship, education and understanding, and with advanced treatments she has recovered well.

“I think going to the support group was one of the best things I did because the women I met were all amazing and I came away feeling as if I wasn’t a victim, I realised I had nothing to moan about and most importantly that I wasn’t alone, other women were dealing with this too.”

Abby has made an impressive recovery. She is now in Sydney working full time as a legal assistant, and is finishing her law degree part-time. In between work, study, meeting friends for drinks or going for a jog, she squeezes in time to speak publicly about her experience of being HIV-positive.

“HIV is a human condition, it can affect anyone, it doesn’t discriminate. We all have to be agents for our own sexual health and it has to be on our radar that anyone can get HIV, even young Aussie heterosexuals.”

ImagE abovE Raf

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Michelle Wesley, 49 “I rang my parents and asked them to buy me a ticket back to Australia so I could come home and say goodbye to everyone. That was 24 years ago and I’m still here,” Michelle Wesley says proudly.

Michelle’s journey with HIV began when she was diagnosed in London in the late 1980s. She’d been living out a dream backpacking when she landed in Italy. Her bourgeois new European friends introduced her to heroin, and she quickly became addicted.

Michelle returned to London seeking help to overcome her addiction, which was successful, but three years down the track, she discovered she was HIV-positive. “It was shocking, unbelievable. A million thoughts went through my head and none at the same time, I was numb. I instantly felt shame, guilt and I felt dirty. I assumed I would get AIDS and die and my doctors told me I’d probably be dead within four years.

“I was unaware of HIV, I’d heard about a group of men in San Francisco dying of AIDS but that was the extent of what I knew. There was no treatment, very little

information and I was a woman with HIV which was rare, I was a minority within a minority, it was so isolating.”

Michelle developed an extreme case of shingles and became very ill; she suffered nerve damage and spent six months in a wheelchair alone and a world away from her family. “I called my parents and asked them to bring me home so I could die in Australia,” she says frankly. “I was living day by day and there was no sense of hope at all for my future.”

Her return home was the turning point. She began taking steps to recover, new medications became available and step by step she rebuilt her life. It took her eight painful years to get back on her feet, but she went back to school, re-established a career and today she says she is not just surviving, but thriving. She is passionate about community awareness of HIV and now works as a support coordinator at Positive Women Victoria.

“I’ve learned to live with HIV, I co-exist with it.

I’ve now lived more years with HIV than without it,” she says, “I have a very rich, full, enjoyable life and I make the most of every day.”

Rebecca Matheson, 45 “I don’t have time to be sick!” says busy mum-ofthree Rebecca Matheson. And she’s not joking. With children ranging in age from 17 to three, the 45year-old Melbourne mum runs an unenviable diary. She works full time and spends most weekends behind the wheel of ‘mum’s taxi’ service, and if she’s not ferrying kids around to ballet, sport or social activities, they’re packing her house to its rafters. “I have a house full of teenagers every weekend,” she laughs, “we are a very typical family.”

Rebecca has been living with HIV for more than 20 years. She was diagnosed with the virus after a backpacking holiday to Africa in 1994. She has defied the odds, and proudly pushed the boundaries.

She married, started a family, and has lived a

healthy happy life, despite the dark cloud that hung over her initial diagnosis.

“I’m a mother, wife, I’m involved in my community, and I just get on with my life every day, HIV doesn’t define me at all. I’ve never had an AIDS-defining illness. When I came home from Africa, I thought I had malaria, I didn’t imagine it would be HIV, but I’ve maintained my health, I look after myself and do everything I can to manage the virus.”

Disclosure, she says, is still one of the most challenging aspects of being HIV-positive. “I choose who I tell very carefully, I’m confident, I have a great support network around me but I’m well aware there are still huge misconceptions about HIV. I was lucky that my husband saw HIV as only a part of who I am.” She says it’s important to speak out about the virus, because "we want people to know [with treatment] you can live well with HIV”.

I was lucky that my husband saw HIV as only a part of who I am.

Dianne Nyoni, 45 Just three years ago, Dianne Nyoni was dying. She’d been rushed to hospital so unwell, that doctors thought she had brain cancer. The single mother-of-four underwent emergency surgery to remove lesions from her brain but was shocked when doctors told her she didn’t have cancer at all; she was in fact suffering the effects of AIDS. “I had absolutely no idea I had AIDS,” she says, “in hindsight it made sense, I’d been suffering a number of illnesses and my immune system wasn’t functioning at all.

I’d had this lump on the side of my neck that wouldn’t go away and although I’d been going to the doctors to get help, I’d been misdiagnosed, I never imagined it was AIDS.” Dianne had contracted the virus from her ex-husband; she believes it was in the last few months of their relationship, when their son Izaiah, now 11, was conceived. The marriage ended before Izaiah was born and Dianne worked hard to build a new life for her family; she went back to school, graduated and began a career working with women suffering domestic violence, unaware she was HIV-positive.

“When the doctors traced back how long I had it, it

coincided with breastfeeding Izaiah, I was terrified I may have passed it on to him.

It was the longest weekend of my life waiting for tests results to come in, but thankfully he’s all clear,” she says.

Despite the physical and emotional challenges she has faced, Dianne has refused to become ‘a victim’. “I went from being the one who offered support in a crisis, to the one needing support and that was tough,” she says, “but I wanted to work and I wanted to contribute to the community so I began speaking publicly about AIDS to educate and raise awareness about the virus, I became an activist.

“Women with AIDS are almost invisible in this country, we need to talk about it, support one another and educate people about what living with HIV and AIDS really means. We are everyday women, mothers, daughters, educated women — women from all walks of life.”

publIshEd wITh pERmIssIon of ThE ausTRalIan womEn’s wEEKlY/bauER mEdIa. phoTogRaphY bY Eamon gallaghER

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DOCTOR LOUISE ANSWERS YOUR QUESTIONS

what’syourproblem?

What if I give my man HIV? tania from launceston writes: I’ve just met this amazing man; he knows I’m HIV- positive and has no problem with it. But I do.

Although my viral load is undetectable, I am still terrified I’ll pass the virus on. What steps can I take to reduce the risk? dr louise replies: Thanks Tania, it is great that you have discussed this with you partner and “he has no problems with it”. I encourage you to keep talking and reading as more information and knowledge will help you both.

I probably need to know a bit more information to help answer your question. Are you using condoms at the moment? Do you need to consider contraception also? What antiretroviral medications are you taking? How long has your viral load been undetectable?

As you hopefully know, you can still have a fun and healthy sex life with HIV. Research has confirmed that when a person is on HIV medication and has maintained an undetectable viral load for more than six months, there is an extremely low risk of HIV transmission.

(If you haven’t already, you should both be screened for sexually transmissible infections as, in some cases, the presence of an STI can make HIV easier to transmit.)

Despite the low risk of infection, for added protection and peace of mind, many people in serodiscordant relationships (partners with a different HIV status) choose to also use condoms.

Having condoms, lube and dental dams close by means it will be easier to reach for them should

an intimate moment strike!

Don’t forget many sexual and intimate activities carry no risk of HIV transmission. This includes massage, mutual masturbation, kissing and oral sex. Exploring your likes and dislikes with your partner is part of the fun of getting to know each other.

There are other protections to call on: we would encourage your

partner to be aware of PEP — post-exposure prophylaxis.

PEP is a course of HIV medication that may be taken should the condom break or come off during sex; you can discuss this with your doctor (although, once again, if the virus is suppressed through medication, the risk of infection is negligible).

Another option to consider is PrEP— pre-exposure prophylaxis. This is where a HIV-negative person takes a daily medication to prevent HIV transmission. Currently, the HIV medication used for this — Truvada — has not been licensed for PrEP use, but it is available on private prescription, and again, your doctor should be able to provide information to you and your partner about PrEP. These days, there are a

plethora of HIV prevention tools available. It is up to each couple to choose what works best for them. But information is key. For more advice email pozhet@ pozhet.org.au, or call 1800 812 414. All the very best.

Keep your questions under 100 words and email them to pl@napwha.org.au. n dr louise owen has been working as a sexual health physician in the hIv sector since 1993. previously a director of vaC’s Centre Clinic in melbourne, she is currently the director of the statewide sexual health services in Tasmania. her advice is not meant to replace or refute that given by your own health practitioner, who is best placed to deal with your individual medical circumstances.

THEPILLBOX

Poster boy for pharma greed When Martin shkreli jacked up the price of an HiV drug by a whopping 5,500 percent, Walter palmer must have let out a huge sigh of relief. palmer is the us dentist who killed cecil the lion on a hunting trip in Zimbabwe earlier this year. He was the most hated man on the internet. not any longer.

Shkreli (PICTURED FAR RIGHT) is the founder and CEO of a company called Turing Pharmaceuticals. In August, Brooklyn-born Shkreli bought the rights to manufacture and distribute Daraprim — a lifesaving drug used to treat toxoplasmosis, a condition that can afflict people with weak immune systems such as those living with HIV/AIDS. Shkreli promptly raised the price of Daraprim from US$13.50 to

US$750 per pill. (Each pill costs US$1.00 to make.)

Social media exploded: a “morally bankrupt sociopath”, a “scumbag”, and “everything wrong with capitalism” were just some of the more restrained comments levelled at the 32-yearold hedge funder. Shkreli’s action generated mainstream media coverage, too, putting the spotlight on pharma profiteering.

In an effort to quell the outrage, Shkreli went on a media defensive. However, his aggressive stance only made him even more of a reviled figure. He explained to one TV interviewer that he didn’t understand what all the fuss was about, after all, he said, he was only trying to “turn a profit”. He told Business Insider Australia: “There have been hundreds of companies that have

raised [their drug prices] higher, and they’re not rolling back their prices, so why should we?”

Both the Infectious Diseases Society of America and the HIV Medicine Association sent a joint letter to Shkreli calling the price increase for Daraprim “unjustifiable for the medically vulnerable population and unsustainable for the healthcare

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system”. Presidential candidates also weighed into the controversy: Hillary Clinton and Bernie Sanders proposed regulating prices for prescription drugs; Donald Trump called Shkreli a “spoiled brat”.

After a week of public condemnation Shkreli appeared to have a change of heart, telling America’s ABC News: “We’ve

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agreed to lower the price on Daraprim to a point that it is more affordable and is able to allow the company to make a profit, but a very small profit.”

Hmm, a “very small profit” says Shkerli. Apparently, he proposes to reduce the price of Daraprim by half, meaning a price tag of US$375 for a drug that costs a dollar to produce.

And that discount is being offered to hospitals only. Individuals will still have to cop the full whack. In response to the news, president of the Human Rights Campaign, Chad Griffin said: “[Shkerli’s] desire to turn a profit at any cost and brazen disregard for the wellbeing of the most vulnerable patients — including people with HIV — is appalling and contemptible.” Much like the man himself.

WHEN THE WORLD WOKE UP TO AIDS October marked the 30th anniversary of the death of Hollywood screen idol Rock Hudson. Christopher Kelly looks back at a seminal moment in AIDS history.

WHen rock Hudson reunited with doris day in July 1985 for a tV show, his appearance visibly shocked his former rom-com co-star. the once burly, handsome Hollywood leading man looked a shadow of his former self. His face was drawn and gaunt; he looked emaciated. Hudson was 59, but easily looked a decade older.

Hudson explained to Day that he had had the flu and was unable to gain his weight back (he told others he was anorexic).

Day suggested to her friend of 25 years that he forget about the TV recording and instead rest up at her home in Carmel. Hudson insisted the program go ahead. It was his last public appearance.

Unknown to Day and the rest of the world, Hudson — one of the biggest movie stars of the ’50s and ’60s — had AIDS. Immediately following the TV recording with Day, Hudson flew to Paris in a desperate last-ditch attempt to seek medical help. He had been advised of an experimental drug being used to treat AIDS patients — HPA-23.

While in Paris, Hudson collapsed

in his suite at the Ritz Hotel. A hospital spokesman told reporters that the actor was suffering from “fatigue and general malaise”.

Hudson’s American publicist said his client had inoperable liver cancer.

Hudson had been diagnosed with AIDS in June 1984. His visit to the doctor was triggered by an irritation on his neck. It was a lesion; an early symptom of Kaposi’s sarcoma, a rare cancer that afflicts AIDS patients. Upon hearing the diagnosis, Hudson said: “Why me? I don’t know anyone who has AIDS.” As he had done with his private life throughout his 37year acting career, Hudson intended to keep his illness secret.

But his ravaged appearance attracted media scrutiny and the ailing actor was forced to make an announcement. “The hardest thing I ever had to do in my life was to walk into his room and read him the press release,” said Hudson’s Paris spokeswoman, Yanou Collart. “I’ll never forget the look on his face. Very few people knew he was gay. In his eyes was the realisation that he was destroying his own image.”

Having approved the press statement, Hudson said: “That’s what they want. Go give it to the

dogs.” Collart duly informed the media pack that Rock Hudson, the personification of wholesome all-American masculinity, had been diagnosed with acquired immune deficiency syndrome.

“In one stroke,” wrote Randy Shilts in And the Band Played On, “[Hudson] was revealed as gay and suffering from the affliction of pariahs.”

Elizabeth Taylor, who met Hudson on the set of Giant in the mid-1950s, rang to thank her friend for his honesty, telling him it would save millions of lives.

Fans sent thousands of letters of support. Hudson’s biographer, Sara Davidson, said the star was touched by the public response. “I think it gave him a lot of comfort in his last days,” she said.

Hudson left the hospital on a stretcher and, at a personal cost of US$250,000, was forced to return to America on a chartered Boeing 747 as no airline would allow him on board. After a month of treatment at the UCLA Medical Centre, Hudson went home to his Beverly Hills mansion, The Castle.

Orchestrated by Taylor and Day, a Hollywood AIDS benefit was held in Hudson’s honour on 19 September. The star of more than 60 films was bed-bound, too

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weak to attend. He sent a telegram read out by friend and fellow actor Burt Lancaster: “I am not happy that I am sick; I am not happy that I have AIDS,” it read.

“But if that is helping others, I can, at least, know that my own misfortune has had some positive worth.”

The star-studded event attracted 2,500 people and raised US$1.3 million for AIDS research.

Told of this, an incredulous Hudson said: “All that because I said I have AIDS?” Two weeks later, Hudson was dead. He died peacefully in his sleep six weeks shy of his 60th birthday. Hearing of her friend’s death, Taylor said: “Please God, he did not die in vain.”

He had not.

On 2 October, the day of Hudson’s death, the US House of Representatives galvanised the medical community into action by authorising US$189.7 million to fund AIDS research. Shamefully silent up until that time, President Ronald Reagan publicly addressed AIDS shortly afterwards. Suddenly people began donating to AIDS charities. “Rock’s admission is a horrendous way to

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bring AIDS to the attention of the American public,” said comedian and fundraiser Joan Rivers at the time, “but by doing so, Rock, in his life, has helped millions in the process.”

Chairman of California’s AIDS Advisory Board Bruce Decker said: “His illness and death have moved the fight against AIDS ahead more in three months than anything in the past three years.” AIDS researchers described the actor’s announcement as “the single most important event in the history of the epidemic” and Hudson “the single most influential patient ever”.

HIV specialist Dr Michael Gottlieb, who identified AIDS in 1981 and cared for Hudson during the last weeks of his life, said, although the star would have not chosen his legacy, he had no regrets. “He had a sense it was worthwhile. He expressed he was glad he had gone public,” said Gottlieb. “Maybe he knew that it was doing some good — he couldn’t have imagined how much good it actually did.”

nswnews PositiveLifeNSW Y O U T H T O D AY

Sex, drugs and HIV Given most of today’s youth born in the 1990s missed the AIDS pandemic that spread throughout the world in the early to mid-1980s, HIV is not high on their radar. However, globally, HIV remains one of the most challenging health issues for young people.

While men who have sex with men and injecting drug users remain the highest risk categories for HIV, youth aged 15–24 years make up 41 percent of new infections worldwide. For Australian youth, the dangers of travelling overseas and being naïve about HIV are especially high risk.

Positive Life recently heard of two young couples fresh out of

grade 12 who travelled to Bali to celebrate the end of school and the start of their adult lives. Both young men got tattoos from unsterilised equipment and they contracted HIV. Four young lives were changed forever when their girlfriends contracted the virus.

Of the 354 people in NSW diagnosed with HIV in 2013, 21 percent were likely to have been infected overseas. If young people are not informed of the risk of contracting HIV when they’re in unfamiliar surroundings, they easily run into dangers they would never expect to at home.

It’s estimated that around 60 percent of all youth with HIV don’t know that they’re infected.

Usually when people contract

HIV in their youth they don’t receive a diagnosis until they start experiencing symptoms years later.

Young people need to be empowered with comprehensive and correct information about HIV through sex education (including same-sex safe sex-ed),

affordable healthcare aimed at the younger demographic, and access to condoms.

Identifying when someone has contracted HIV earlier means they can start treatment sooner and reduce their risk of passing the virus on. Adapting the message of ‘Test More, Treat

Early and Stay Safe’ to hold relevance for young people will help normalise regular screenings for HIV and other STIs. HIV affects us all and we need to start talking about it. It is not caused by the behaviour of a few reckless individuals. We need to support one another and reduce the stigma still associated with acquiring HIV. Young people need to be informed and empowered so they are aware of the risks and able to do everything possible to look after themselves and their friends. If you or your friends need any info about HIV, call Positive Life NSW on the freecall number below.

HIV-DIFFERENCE

Talkabout now online The latest edition of our online magazine Talkabout: where we speak for ourselves is available to read at talkabout.positivelife.org.au.

The theme — ‘Treatment as Prevention’ — is a celebration of the recent advances in HIV medication.

For the first time in the history of the virus, today's treatments mean we take control of our health and our future. PLHIV are actively contributing to driving down transmission rates and halting the progression of the virus in our bodies. To subscribe to Talkabout online visit: positivelife.org.au/subscribe.html

Loving, lusting andfriendship Positive Life is in the process of gathering real-life stories of people in serodiscordant relationships for a new campaign called ‘HIV Difference?’

We first explored mixed-status relationships in our SeroDisco publications in 2008 and 2012.

The resources were devised to reduce transmission risk, stigma, fear and discrimination, and to demonstrate that HIVdifference is compatible with love or lust.

‘HIV Difference?’ will feature relationships where partners are HIV-negative, HIV-positive or HIV-unknown. Today, for PLHIV

and HIV-negative lovers, friends and fuck-buddies, treatment as prevention and the availability of PEP and now PrEP are beginning to release us from the fear of HIV transmission. HIV no longer stands in the way of emotionally and physically rich relationships, ‘no strings attached’ fun, or love.

‘HIV Difference?’ is a renewed effort to highlight the changes that have made mixed-status relationship negotiations less of a drama. In 2016, Positive Life will publish a contemporary retelling of experiences of serodifferent relationships in a new print magazine and website.

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

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vicnews

Engaging the young It appears young people living with HIV aren’t responding to formal community structures.

As Timothy Krulic reports, they want a space of their own.

When young guys living with HIV told us they didn’t fit in at Living Positive Victoria, we listened. The feedback received told us that young people didn’t see their experiences and needs reflected in the organisation.

They felt unrepresented. What they wanted, they said, was a space of their own — and they got it. That was the genesis of Gen Y Guys.

Since then, the group has evolved. The label ‘Gen Y’ no longer applies to its younger members; it also isn’t seen as a space just for guys anymore.

With all of these changes going on, Living Positive Victoria approached me to conduct a review to help answer some basic

questions that would guide the redevelopment of what’s now called Gen Next.

Some of the questions needing answering were: are there any other groups like this out there? What are they doing and is it working? And what’s the best way to provide support and development for young PLHIV? It turns out that Gen Next is unique in Australia. It’s the only social support service prioritising

PLHIV in their 30s or younger.

Most other community health and HIV organisations incorporate young PLHIV into their general groups or one-onone peer support services. They tend not to differentiate the younger population as having separate needs or requirements for accessible, appropriate and effective support.

Talking to service providers as far afield as Toronto, Vancouver,

New York, San Francisco and London, it became clear that young people disassociate their needs from traditional support structures. For many, the very notion of a ‘support group’ carries negative connotations of excessive emotional neediness.

To be effective in achieving sustained social inclusion and engagement with young people, group peer support models need to involve them in the

development and implementation of such groups to ensure they remain appropriate to their needs.

Accessible community is safe, non-judgemental, and inclusive.

It also needs to exist where young people do: online, in social media, and in youth culture spaces (like clubs and bars, cafés and outdoors).

These, and other findings, can be found in my Review of Youth Best Practice. But the bottom line is that empowering young PLHIV to create their own support networks that focus on the issues most relevant to them enables young people to forge community and a sense of belonging.

Timothy Krulic is an honours student at the University of Melbourne’s School of Historical and Philosophical Studies. He helps facilitate Gen Next and consults for Living Positive Victoria.

The truth about meth A peer-driven online resource for gay guys living with HIV who use crystal methamphetamine (otherwise known as Tina) was recently launched in Melbourne.

The resource — called Turning Tina — was created in partnership between TIM (The Institute of Many) and Living Positive Victoria.

“Turning Tina is the culmination of over a year-long community consultation, the majority of which came via an informal survey with some

generous TIM members,” said TIM co-founder Nic Holas. “For us, the need for such a resource was evident in the very strong and very divided beliefs about crystal use in the community, often on display in discussions in the TIM group. When you combine those perspectives with a largely hostile media — and at times government — a resource that spoke to the community using their voice as the basis became

incredibly important.”

The resource explores what crystal meth does to the body and how recreational use can become problematic.

It also offers advice on how to reduce harm, and how guys can find ways to better look after and support one another.

“We hope this resource encourages HIV-positive queer men to realise there are many options available to them to reduce the harms

related to using crystal, should they make that choice. We see in the community HIV-positive gay, bi, and trans men go past the point of self-control or selfmanagement because they don't feel they can talk about [their ice use] because the stigma surrounding this drug is so great,” said Holas. “We hope this resource gets poz guys talking, before it's too late.”

To view Turning Tina, visit theinstituteofmany.org/ index.php/home/turning-tina/

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

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qldnews

TA L K I N G A B O U T T R E AT M E N T

Real lives on film In a series of short films, people living with HIV share their experiences of being on treatment. As project leader Jamie Perks reports, the hope is that the stories will help others make informed decisions about their health and wellbeing.

Treatment for HIV has come a long way. In the beginning, the drugs were toxic; the side effects extreme. A person living with HIV would be taking a handful of pills every day. Treatment is different now.

For many, a single pill is all that’s needed. The drugs are so effective that the virus can be suppressed to such a level that it’s undetectable, which in turn greatly reduces the risk of onward transmission. With treatment, a HIV-positive person is able to live a normal lifespan.

That said, it’s not all rainbows

and unicorns for people living with HIV today. People must adhere to strict treatment regimens, understand and manage the potential sideeffects, and feel empowered to speak with their specialist about the range of options available.

With that in mind, Queensland Positive People has launched a new campaign called ‘Talking about Treatment’. “We want newly diagnosed PLHIV to identify and understand the personal benefits in commencing and adhering to HIV treatment,” explains Chris Howard, QPP programs manager. “The aim is to increase awareness of how far treatment has advanced.”

It’s estimated that among Queensland’s positive population, 85 percent of PLHIV

are on treatment. That leaves 15 percent who are not. These people are the campaign’s target audience. Keen to humanise the message, QPP put a call-out for members of the HIV community to share their stories. The films feature long-term survivors and the recently diagnosed. Reflecting the diversity of experiences, participants include a mother of five, an Aboriginal man, an older man, and two young gay men.

Each of them offers a unique and powerful perspective of the HIV treatment response over the decades — from the early years of the AIDS crisis, to the introduction of antiretroviral therapy in the mid-90s, right up to the treatments of today. From the beginning, the film production company — Light +

Shade — understood the brief to portray the lived experience of people living with HIV. “At the heart of each of these personal films is an amazing journey of life, stories that we are proud to have the opportunity to help tell. It’s a great responsibility when someone gives you their story to express and, while it’s daunting, it’s something we love to do and take very seriously,” says producer Matt Bamkin.

“We set out with the clear intention to create compelling and thought-provoking, honest accounts of our contributors’ stories, staying true to their emotional and physical journeys.

Viewers can look forward to delving into the lives of a group of extraordinary people; people

who are overcoming their challenges and living exceptional lives.”

The end result is a series of stunning films in which PLHIV are shown to live full and productive lives — and, through treatment, successfully managing their health along the way. As Campbell says in the film: “I’m controlling HIV, HIV’s not controlling me.” Jarad recalls the day he discovered he’d achieved an undetectable viral load. “Being HIV-positive and being undetectable means you can feel empowered and like you’re in control of your health,” he says. “It was a big thing for me.”

We hope these stories inspire you. If so, please share the films with others and start a conversation with someone. Talk about treatment. And if you are seeking guidance or more information regarding treatments today, please call QPP on one of the numbers below.

To view the Talking about Treatment campaign, visit qpp.net.au/talking

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

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tom Knight’s exchange with a guy on Grindr went viral after he posted his response on facebook. patrick strudwick speaks to Knight about the incident and stigma in general.

What happened on Grindr? tom knight: i’d been talking to this guy for a few days, and he first of all asked me: “are you clean?” i hate that term; as if HiV means you’re dirty. i just said: “i’m HiV-positive.” and he didn’t reply. so i said: “if you’ve got a problem with that, fine, let’s just not talk.” after not hearing from him for a couple of hours he said: “oh, you’ve got HiV? i’m not ready for that kind of complication in my life.” Having flicked through his pics, i replied: “oh, you still wear flared jeans? i’m not ready for that kind of complication in my life.” He went on to say: “someone in your situation should be a bit more realistic,” to which i replied: “Well, the good news is my HiV can be treated. your fashion sense however . . .”

When someone asks if you’re “clean”, are you not tempted to just ignore them? tk: yeah, half of me is, and the other half feels i should challenge them. i’m open about my HiV status, i’m quite a strong person, and i can deal with most crap people throw my way about it, so i’m trying to change attitudes a little bit. i like to see where such attitudes stem from, because some people make flippant comments and don’t realise what they’re saying. it can be complete ignorance; it doesn’t always come from a malicious place. people like him don’t have any knowledge about HiV and don’t know what “undetectable” means and don’t realise that it means you can’t pass the virus on.

How did you feel when that guy said he’s “not ready for that complication”?

POSITIVE VOICES POSITIVE PEOPLE SHARE THEIR EXPERIENCE OF LIVING WITH HIV

tom knight

A perfect slApdown tk: it’s a kick in the teeth. every time it’s a kick in the teeth. it’s not easy telling people i’m positive. you worry about what they’re thinking about you. i get some people who are simply extremely curious about it and will ask what it’s like for me and how i’m doing. sometimes i sense they’re not interested in pursuing anything other than a conversation after that.

What’s the worst comment you’ve had? tk: it wasn’t online. i was on the scene, and someone came up to

me when i was talking to his friends in the smoking area, and he said to them, “be careful what you’re gonna catch off her,” and then walked away.

What was that like for you? tk: soul-destroying. that just feeds the insecurity that comes with HiV. that [insecurity] is the biggest thing that changed when i became positive: the anxiety around not knowing who knows and what they think about it. it’s a game-changer. it affects your self-esteem. My doctor wants me to try meditation to stay on the

right [psychological] track, because it’s so easy to drown yourself in the negativity that’s around.

How have you found dating generally as an HiV-positive man? tk: i’ve found it more difficult, but a lot of that comes from myself. it’s not always other people — it’s the worry of what other people will think. if i meet a guy and we get on i won’t pursue it because sometimes i presume it’s not going to go anywhere. i am learning to deal with my feelings around it and dating.

Have people said they were fine with you being positive and then it transpired that they weren’t? tk: yeah. i started dating someone last summer, someone i’d known for about four years.

He’d liked me all that time, and we started dating and he was always saying, “i’m here for you,” but the moment it became a physical relationship? the next day i didn’t hear from him again. it was upsetting because we connected on so many levels and we got on, we had a really good foundation in friendship, and it was so sad because i knew how much he liked me. it was so frustrating that he couldn’t handle the physical side of it — the worry about the HiV stuff.

What other experiences have you had? tk: sometimes when people are HiV-negative you can feel like they’re holding back around kissing and things, and that’s gutting. i’ve had other HiVpositive people tell me, “oh, just date other positive people,” and i can see their point but that’s so sad for me because i don’t just want to date other HiV-positive people. i can see the logic of it, because you don’t have to explain everything all the time, but it’s not the way forward, because we don’t need to segregate ourselves. discrimination can cut both ways. i’ve met HiV-positive people who say, “Why go for a negative person? you have to wear condoms, condoms are vile.” the thing about having HiV — you stumble across a lot of stupidity.

Patrick Strudwick is LGBTI editor for Buzzfeed

“oh, you’ve got hiV? i’m not ready for that kind of complication in my life.” tom KniGht “oh, you still wear flared jeans? i’m not ready for that kind of complication in my life.” the Guy on Grindr

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THE

Stoned love FOR MED ADHERENCE WHILE TRAVELLING n Pack a few extra. When travelling, unexpected hiccups may occur. so it's always best to have an extra supply of medication in case of delays. n Keep your meds close. make sure to always pack your medicine in your carry-on. n Set alarms. travelling causes exhaustion, and with exhaustion comes forgetfulness. setting a daily alarm will help — at least with the forgetting. n Extreme time zone changes. if taking a longhaul flight, take the time to do the maths and calculate your medication times. n Pocket your pills. When you’re out of your normal routine, it's hard to predict exactly what may prevent you from taking your medications so make it a habit to carry a daily dose or two in your pocket.

it’s summer, which means stone fruit season. peaches, nectarines, apricots, plums, cherries and mangoes are all ripe for the taking. this is great news for your health as all are rich in vitamins a, c and e. they also contain dietary fibre, potassium and antioxidants. as well as helping to boost your immune system, stone fruits strengthen bones and encourage healthy digestion.

For a stone-fruit smoothie peel and dice 1 mango; pit and chop 1 plum, 1 peach and 1 apricot; grate a little lime zest. place ingredients in a blender and hit high for 30 seconds. add 1⁄ 2 cup of ice cubes and blend for 20 seconds more until crushed. serve. it’s summer in a glass!

QUOTEUNQUOTE

Viruses have no morality, no sense of good and evil, the deserving or the undeserving . . . AIDS is not the swift sword with which the Lord punishes the evil practitioners of male homosexuality and intravenous drug use. It is simply an opportunistic virus that does what it has to do to stay alive.

BEET THIS!

beets are an ancient, prehistoric food containing a variety of unique healthboosting properties. they increase stamina, provide cardiovascular benefits and fight inflammation. beets are high in immune-enhancing vitamin c, fibre and manganese — which is good for the bones, liver and kidneys.

For a super-healthy summer smoothie place 1⁄ 2 cup freshly squeezed orange juice, 1 cup mixed frozen berries, 2 tbsp granola, 1⁄ 3 cup diced raw beet, 1⁄4 cup low-fat natural yogurt, 1 tsp of honey, and 3 ice cubes in a blender. blast for 60 seconds, pour into a glass and enjoy . . . positiveliving l

16

l summER 2015-2016

Chris Crutcher, novelist

GOFIGURE q

About

5,600 people contract HIV every day, more than

230

every hour