Positive Living Winter Issue 2016

positiveliving FOR PEOPLE LIVING WITH AND AFFECTED BY HIV | WINTER 2016

It’s here!

But at what cost?

POSITIVE VOICES POSITIVE PEOPLE SHARE THEIR EXPERIENCE OF LIVING WITH HIV

Serodiscos TALK TREATMENT AS PREVENTION Magnetic couples (partners of mixed HIV status) share their thoughts on treatment as prevention and the effect it’s had on their relationships.

from

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Scientists have designed a gene-editing system that eradicates HIV from human cell DNA. It may hold the answer for an eventual cure, one that can protect cells from reinfection, is safe for the cells, with no toxic effects.

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GREY TECHNICOLOUR to

Twenty years on, the arrival of protease inhibitors is still considered the biggest event in the history of HIV treatment. However, the drugs weren’t without baggage.

Legacy

silence

OF

7-8

what’syourproblem?

How do I take PrEP?

When Nancy Reagan was hailed as an advocate for action against AIDS, the uproar was immediate.

10

thepillbox 10

11 Genvoya gets listed

positiveliving ISSN 1033-1788 EdITOr Christopher Kelly

david menadue Vicky Fisher CONTrIBuTOrS randelle Anderson, Karen dorante, Jake Kendall, dr louise Owen, liz Sutherland, Peter Watts dESIGN Stevie Bee design ASSOCIATE EdITOr PrOOFrEAdEr

COVEr ImAGE xx

Free subscriptions are available to HIV-positive people living in Australia who prefer to receive Positive Living by mail. To subscribe, visit napwha.org.au or call 1800 259 666. contributions Contributions are welcome. In some cases, payment may be available for material we use.

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

The flu season is here

if you haven’t had your flu shot get jabbed today, that’s the advice from health experts.

The vaccine is free for people with impaired immunity, such as those living with HIV. This year’s vaccine will protect against four strains of the influenza virus instead of the usual three — including two aggressive B strains that caused misery for thousands last year.

Studies indicate the vaccine to be 70 percent effective. It’s important that people get vaccinated early so as to develop immunity before transmission of influenza is at its highest (between August and September).

Last year saw a record number of influenza cases — more than 90,000.

The good news is that there’s a good chance that the influenza B outbreak of last year won’t be repeated.

Although it’s difficult to predict what influenza strains will be prevalent this coming season, researchers look to the northern hemisphere for clues. Last year, influenza A strain — H1H1 — was prominent.

Seasonal influenza is highly contagious. Unlike the common cold, it can cause severe illness and, in extreme cases, be fatal; it’s estimated to cause more deaths than road accidents every year. People living with HIV have a high risk of developing complications from influenza, experts warn. Flu symptoms include fever, chills, severe cough, headaches, muscle aches and pains, and a sore throat.

The 2016 flu shot is available now from GP surgeries and some pharmacies.

prep wins approval miscommunication in sexual situations, including misunderstandings around disclosure of HIV status, will decrease and in turn assist in reducing HIV transmissions,” said Cipri Martinez, president of the National Association of People with HIV Australia.

The focus now is on the Pharmaceutical Benefits Advisory Board, which is soon to consider listing Truvada for PrEP on the Pharmaceutical Benefits Scheme for subsidisation. (See page 6)

help achieve the goal of virtually ending new HIV infections by 2020.

As a gamechanging prevention tool, PrEP reinforces the notion of shared responsibility when it comes to HIV prevention.

“The potential for

as expected, the therapeutic Goods administration approved the HiV medication truvada for use as prep (pre-exposure prophylaxis).

Australia now joins a handful of countries to have approved PrEP: the US, South Africa, Kenya, France and Peru.

With the number of newly diagnosed HIV-positive people in Australia remaining steady at around 1,000 a year, it is hoped PrEP will have a profound impact on decreasing new diagnoses and

HIV orgs join global call for universal PrEP access australian HiV organisations have joined community-based groups from around the world to issue a joint global call for universal access to prep.

While several countries have already approved the use of HIV prevention medication — the most recent being Australia — PrEP remains unauthorised in most countries of the world.

Without approval, PrEP is selfprescribed and its use is unmonitored.

Dubbed the ‘brussels appeal’, the document calls on policy-

makers to commit to making PrEP available for people at substantial risk of contracting HIV, and to remove all barriers impeding access.

It asks health authorities and

professionals to integrate PrEP into national recommendations, as part of a combined HIV prevention strategy. As well, pharmaceutical companies are being urged to ensure PrEP is made affordable.

The document reads: “At a time when so many therapeutic milestones regarding HIV/AIDS have been achieved and when, for the first time, the end of the epidemic is possible if we

combine prevention, early diagnosis and immediate treatment, it should be the responsibility of health stakeholders to implement all the tools available, including PrEP, to reach the goal of a world without AIDS.” Among the Australian organisations to have signed the appeal are the National Association of People with HIV Australia (NAPWHA), the Australian Federation of AIDS Organisations (AFAO), Living Positive Victoria and ACON.

pathology cuts on hold proposed cuts of bulk-billing rates of pathology services and diagnostic procedures — such as blood tests, sti screenings, X-rays and Mri scans — have been deferred.

If implemented, the Coalition cuts of $650 million over four years would have left patients with out-of-pocket expenses, the pathology industry has warned.

However, Health Minister Sussan Ley has said: “We do not expect the changes to affect the majority of consumers due to the high level of competition in the sector.”

Industry insiders remain unconvinced, arguing you cannot pull that amount of money out of the healthcare system and expect it not to impact negatively on

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patients — especially those on low incomes and/or with chronic conditions such as HIV.

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“The proposed cuts to pathology and diagnostic imaging simply cannot be absorbed by the sector,” said Liesel Wett, CEO of Pathology Australia, the national peak body for private pathology.

“We want patients to continue to access quality pathology services but government changes mean patients will have to pay once the cuts come in.”

thenews

stigmatising campaign pulled Following fierce criticism from HiV orgs, Hero condoms was compelled to pull a controversial safe-sex awareness campaign.

The move came after negative social media coverage through which Hero’s campaign was widely condemned for stigmatising people with HIV and STIs. The campaign came under fire for featuring fake Tinder profiles, going under

the names of ‘Sydphilis’, ‘Chadmydia’, and ‘Johnorrhoea’. Profiles named ‘Aydes’ and ‘Aidy’ were considered particularly objectionable and stigmatising.

Among the organisations calling for the campaign to be scrapped was the National Association of People with HIV Australia (NAPWHA). In an open letter, NAPWHA executive director Aaron Cogle said: “The

campaign — with its misinformation and offensive monikers — is stigmatising people living with HIV and STIs. Stigmatisation prevents people from testing for HIV and STIs which, in turn, contributes to further transmissions.”

Nic Holas, co-founder of HIV support group The Institute of Many (TIM) — and who led the charge against the campaign —

told GNN: “Hero’s decision to remove the campaign and issue an apology is a welcome and appreciated decision. We’re grateful that the TIM community made their voices heard, along with our allies and HIV organisations.”

Hero Condoms has indicated it will consult with the HIV community on future sexual health campaigns.

Early treatment HiV increase improves quality of life among MsM

NEW ZEALAND

rates of HiV among men who have sex with men (MsM) in new Zealand continue to rise.

Recently released data reveals there were at least 153 new diagnoses recorded among the MSM population last year. MSM diagnoses rates in New Zealand in 2014 were 136; in 2013 the number was 114.

“The figures show that the epidemic is making a comeback with increasing new infections. The trend is concerning and shows the urgent need for a re-

energised response to HIV,” said Nick Laing of the New Zealand AIDS Foundation.

“A combination of prevention approaches including condoms, PrEP, increased testing and early access to medications could truly end new HIV infections. However, we need the support of the government to fund these additional tools.”

Around 1,699 men — mostly gay or bisexual — are currently being treated for HIV in New Zealand.

Further analysis of the start study findings show that people who commence antiretroviral treatment (art) early have a statistically significant improvement in quality of life.

START participants were asked to make a self-assessment of their health — including whether they had suffered any pain recently — and how often they had felt calm and peaceful in the past month.

Those people who began treatment earlier rated higher in terms of good health than participants who had deferred.

Interestingly, a particular improvement was noted in the number of people who said they had felt calm and peaceful.

Starting treatment as early as possible is now universally

considered to be in the best interests of people diagnosed with HIV. As the researchers conclude:

“These findings provide further support to the superiority of early ART.”

HiV laws undermine global response a new report describes HiV criminalisation as: “a growing, global phenomenon that is seldom given the attention it deserves considering its impact on both public health and human rights”.

The report — titled Advancing HIV Justice 2 — claims “unjust” HIV laws undermine the HIV response.

According to the report, laws specifically allowing for HIV criminalisation have been adopted by 72 countries.

Prosecutions relating to breaches of HIV law have been reported in 61 countries — however, this number rises to 105 jurisdictions once US and Australian states are counted separately.

Perhaps unsurprisingly, between April 2013 and October 2015, Russia tops the list for the number of prosecutions, with at least 115; the United States follows with at least 104; third is Belarus with at least 20.

(Australia is eighth on the list, with at least five prosecutions

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during the period.)

The report, however, concludes with some hope: advocacy from individuals and organisations has shown to have a positive effect, with “important and promising developments” in law reform recorded in many jurisdictions.

Victoria is a case in point: Australia’s only HIV-specific law criminalising the intentional transmission of HIV was successfully repealed last year following direct action from advocacy groups.

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thenews

denmark’s TASP success denmark has almost eliminated its HiV epidemic — and it’s largely because of treatment as prevention (tasp), data reveals.

In 2013, the country had only 1.4 new HIV infections per 1,000 men who have sex with men (MSM) — Denmark’s highest atrisk population. “The Danes have done what nobody else in the world has been able to do . . . and they have achieved this simply by providing treatment,” said Professor Sally Blower, a biomathematician and evolutionary biologist at UCLA. HIV infections have been

decreasing in Denmark since 1996 when effective antiretroviral treatment was first introduced.

“In Denmark, 98 percent of patients take all of their HIV medications, which is why treatment prevention has worked

Home-testing kits reveal new diagnoses offering gay men diY HiV testing kits through apps and social media unearths new diagnoses, reveals a uK study published in the journal Sexually Transmitted Infections.

Respondents were able to request either a mouth swab or finger prick home-test kit, which was dispatched with a pre-paid return envelope within 24 hours. In all, 6,000 kits were returned, of which 122 were ‘reactive’ — meaning HIV antibodies were found in blood or oral fluid

samples; 82 cases were confirmed as an HIV diagnosis.

The approach has been found to be successful at avoiding some of the barriers to HIV testing, such as inconvenience, time pressures, privacy concerns, unwanted counselling, and stigma.

“We have the potential to reach [men who have sex with men] who may not otherwise test for HIV, while still offering online education and engagement with services, which home testing may not provide,” said researchers.

there,” said Justin Okano, a UCLA statistician.

“Unfortunately, adherence levels are nowhere near as high in other countries.”

If all countries were able to adopt Denmark’s treatment programs, said Professor Blower, then HIV could be potentially eradicated worldwide. While acknowledging that such a strategy would cost a huge amount of money, she said: “The goal of elimination through treatment is aspirational, but Denmark has shown that it’s achievable.”

AFRICA

Mobile device delivers on-the-spot diagnosis a mobile test kit is revolutionising detection of HiV in sub-saharan africa.

The UK-developed device — called SAMBA (simple amplification-based assay) — can record a diagnosis from a blood sample in just two hours. The size of a small coffee-maker, the machine can be carried on a motorcycle and withstand 50degree temperatures.

Importantly, SAMBA can be easily operated without the need for a laboratory or skilled staff.

“The crucial point about our device is that it provides you with a simple signal,” Professor Helen Lee (at right), a haematologist at Cambridge University and SAMBA team leader, told The Observer.

As well as delivering a quick diagnosis, the machine also measures a person’s viral load — the amount of HIV in the blood.

So far, Lee and her team have tested the machine on 40,000 men and women in Malawi and Uganda. “Now we are going to expand testing for HIV to pregnant women, mothers and newborn children, starting in Kenya,” said Lee. More than one million AIDSrelated deaths occur in subSaharan Africa every year.

HiV edited out of t-cells scientists at the lewis Katz school of Medicine at temple university in philadelphia have designed a gene-editing system that may hold the answer for an eventual cure for people living with HiV. The study — published in the Nature journal Scientific Reports — explains how researchers have eradicated the virus from human cell DNA. “The findings are important on multiple levels,” said senior investigator, Dr Khalil. “They demonstrate the effectiveness of our gene-editing system in eliminating HIV from the DNA of CD4 T-cells and, by introducing mutations into the viral genome,

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permanently inactivating its replication. Further, they show that the system can protect cells from reinfection and that the technology is safe for the cells, with no toxic effects.”

Until now, eliminating the virus after it has incorporated itself into the immune system’s

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CD4 cells has proved challenging. Attempts to kick-start HIV so as to stimulate an immune response that destroys the virus (known as the “shock and kill” approach) has, so far, been unsuccessful. Here, however, Lewis Katz researchers have specifically targeted HIV-1 pro-viral DNA. “These experiments had not been performed previously to this extent,” said Khalil. “But the questions they address are critical, and the results allow us to move ahead with this [geneediting] technology.”

l For the latest cure developments head to HiV cure.

At last, PrEP’s been given the go ahead in Australia.

Christopher Kelly traces the journey. David Menadue shares a positive perspective.

IT’S FINALLY HERE!

A

Few weeKs aGo, tHe tHerapeutic Goods adMinistration GaVe truVada a ticK For use as a druG to protect aGainst HiV. Australia’s inclusion into the exclusive prep club is welcomed

by HIV orgs. Describing the decision as a “revolutionary development in the fight against HIV”, Darryl O’Donnell, executive director of the Australian Federation of AIDS Organisations (aFao), said: “In registering Truvada, the TGA has confirmed that this is a safe and effective way of preventing HIV transmission through sex. Truvada for PrEP [pre-exposure prophylaxis] gives people at risk a powerful new option for taking control of their health; it puts them in control to stay HIV-negative.”

So what is Truvada? It’s a combination of two drugs. The first, tenofovir, was manufactured by a Czech scientist in Prague in 1983. Not long after, collaboration with Gilead Sciences led to the investigation of tenofovir as a potential treatment for HIV. The second compound, emtricitabine, was formulated by US scientists at Emory University in Georgia in the late 1980s. Gilead acquired the rights to emtricitabine in 2003. Marketed under the brand

name Truvada, the combination was synthesised by Gilead in 2004 as a frontline treatment for HIV. Then, in 2010, results from a US trial found that, when taken daily by HIV-negative people, Truvada reduced the risk of contracting HIV by more than 90 percent. Given that Truvada as PrEP appeared to work miracles, you’d think there would’ve been a mad rush to get hold of it.

But when it was first

introduced in the US there were fears PrEP would precipitate a public health catastrophe.

Michael Weinstein — president of the world’s largest AIDS organisation, the AIDS Healthcare Foundation — famously described Truvada as a “party drug”. PrEP use was widely predicted to lead to high instances of condomless sex that would in turn unleash an explosion of STIs. As it turned out, the concerns

proved unfounded: a metaanalysis of major studies of PrEP concluded that, according to several measures — including reported condom use, number of sexual partners, and STI infection rates — PrEP was “consistently not associated with an increase in sexual risk-taking”.

Throughout the PrEP debate, Australia escaped the scaremongering and moralising.

From the outset, HIV community

PrEP: a positive perspective With the arrival of PrEP, my hope is that HIV-positive people will feel much greater selfesteem as now they will be seen by potential sexual partners as no different to anyone else. As a result, we will be less likely to face rejection. This will help the mental wellbeing of many positive people who have sometimes turned to drugs and alcohol excessively to cope with the isolation they have felt because of stigma and discrimination.

PrEP has been most helpful with friends of mine in poz-neg relationships. They say there is far less anxiety about

transmission, and that PrEP has increased intimacy. Even when the positive partner is on treatments and has an undetectable viral load — which means transmission is highly unlikely — it can sometimes be a bridge too far for the negative partner and/or positive partner to have condomless sex. PrEP now makes this possible.

Even for those of us not in relationships, the thought that a sex partner is on PrEP is a reassurance. It indicates that they have educated themselves about their personal safety and are looking after themselves.

Acknowledging that someone is

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on PrEP will make the process of sexual negotiation much less fraught.

PrEP will liberate gay men in particular from the horrible fear that has hung over many of us for decades. To be able to have unprotected sex without the fear of transmission, to not feel the guilt that people experience after an episode of unprotected sex will be a huge relief. The arrival of PrEP and the removal of fear will hopefully help decrease stigma. Now that PrEP is here, let’s hope that the divisions within the poz and neg communities will dissolve.

David Menadue

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orgs framed PrEP as another tool in the prevention kit — alongside condoms, negotiated safety and treatment as prevention. “We know condoms work,” said O’Donnell. “Now we have a pill that works.”

With TGA approval out of the way, the focus of attention shifts to affordability. “For PrEP to have maximum impact, it is vital that anyone who is at high risk of becoming HIV-positive is able to afford it,” said Cipri Martinez, president of the National Association of People with HIV Australia (napwHa) “The only way for that to be achieved is for Truvada to be placed on the Pharmaceutical Benefits Scheme as soon as possible.”

O’Donnell agrees: “We have a national, bipartisan commitment to virtually eliminate HIV transmission in Australia by 2020. That’s only four years away; affordable, PBS-listed PrEP would make all the difference.”

Truvada currently costs $9,000 for a year’s worth of treatment — a price O’Donnell describes as “prohibitive”. It is hoped it will be become more affordable once the Pharmaceutical Benefits Advisory Committee meets in July. After all: “Without PBS listing,” said O’Donnell, “[PrEP] is a wasted tool.”

FROM GREY TO Twenty years on, the arrival of protease inhibitors is still considered the biggest event in the history of HIV treatment. However, as Christopher Kelly and David Menadue report, the drugs weren’t without baggage. paul Keating loses to John Howard in a federal election; australia loses to sri lanka in the cricket world cup; 35 people are killed in the port arthur Massacre. the no. 1 song of the year is The Macarena. still, 1996 wasn’t all bad.

In July, the XI International AIDS Conference heralded the arrival of a pivotal point in the HIV/ AIDS epidemic — an epidemic that in Australia alone would see 20,299 diagnoses of HIV and 5,260 AIDS-related deaths by the end of the year.

Conference delegates in Vancouver were presented with data that showed — when used in combination with existing medications — a new class of drugs, called protease inhibitors (or PIs) slowed HIV replication dramatically. The amount of virus

in the bloodstream was reduced on average by up to a thousandfold. These PI ‘cocktails’ — referred to as highly active antiretroviral therapy (HAART) — were literally bringing people back from the brink of death.

The key to HAART’s success lay in the drug combination's ability to disrupt HIV at various stages in its replication. Reverse transcriptase inhibitors (which usually made up two drugs in the HAART regimen) restrained an enzyme crucial to an early HIV developmental stage. Protease inhibitors, meanwhile, held back another enzyme that functions near the end of the HIV

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reproduction life cycle. Whilst researchers were insistent that these drugs were in no way a cure, their capability to repress the virus went way beyond the most optimistic of expectations.

The news went around Australia like wildfire, prompting an extensive uptake of the new combination drugs as soon as they became available. “The impact was immediate and extraordinary,” says Andrew Kirk.

“My body felt transformed as an enormous amount of energy was restored. Symptoms gradually resolved and tests confirmed that the virus was laid to waste. The dream that I had wished for, for

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so many years, had arrived.”

The first line of PIs to be tried on Australian patients was called Saquinavir. “I can't begin to describe the wondrous change that occurred in my body: my mood and energy levels picked up remarkably,” says David Menadue. “It was common to hear reports of people doing the ironing at 2am or becoming obsessive gym junkies. One friend dug up a whole garden bed before stopping and asking himself: ‘Just what am I doing here?’ There were gay men who took recreational drugs on the weekend who would pay hard cash for this experience, people

were saying. There was talk that if patients took the drugs for long enough the virus might be eradicated from the body altogether. The end of AIDS!” Not everyone was convinced of these so-called wonder drugs.

Once bitten twice shy, there were some that daren’t dream the nightmare was over. “Today, we imagine that the new treatments arrived with a bang and life changed. That’s true, but only in part,” says Darryl O’Donnell.

“We didn’t know that then. We didn’t know life would stay changed. It took me a long time to realise what the new treatments meant — to trust their promise. Treatments had failed us before, and hoping the horror had passed was still too great a leap to take.”

“We were rocking, but at the same time reeling — my own mood oscillated between grief and optimism,” says Michael Hurley. “I knew too many people whose bodies had been ravaged by illness.”

People were right to be wary. It soon became apparent that life on the new treatments was no barrel of laughs. “The number of tablets we had to take and the many times we had to take them meant we spent most of our day preoccupied with remembering to take the pills,” says Menadue.

“The Saquinavir regimen involved taking 18 pills a day, on top of the other antivirals and the prophylactic drugs. My total pill count was 34 and they had to be taken at different times of the day.”

Additionally, some drugs had to be taken with food, others on empty stomachs. “When Saquinavir stopped being effective for me, after about six months, I was placed on a new protease called Indinavir, which had the added complication of having to be taken on an empty stomach twice a day. I was also on pills I had to take with food,” says Menadue. “I was now taking pills five times a day and had to stop and start my eating to accommodate this routine.”

If not taken strictly as prescribed, drug resistance could occur. Even if taken religiously, there were failure rates of 10 percent. Among those in the latestages of the disease, the virus was seen to flare up after a few weeks or months. In the US, they termed it “crashing”. Then there were the debilitating side effects: nausea, diarrhoea and constant fatigue.

Still, the significance of the

They weren’t the perfect drugs, but they were darned effective at emptying out the hospital wards.

HIV CLINICIAN AND RESEARCHER PROFESSOR ANDREW CARR

“protease moment”, as it was dubbed, could not be overexaggerated. Suddenly, people with HIV were faced with an unexpected prospect: a future.

“Protease inhibitors are now a pretty unremarkable part of the HIV treatment scenery,” says Geoff Honnor. “But in 1996 — fifteen relentless, frustrating and terrifying years after the US Centres for Disease Control first reported a strange cancer as a common factor in presentations of seriously ill gay men in New York and San Francisco — it was a bit like discovering the Holy Grail, except better.”

This ‘Lazarus effect’, however, brought about profound psychological side effects. For years, people had been living with what they understood to be a terminal condition. “People who were supposed to die didn’t,” says O’Donnell. “They were as surprised as anyone.”

Men in their 20s had made out wills; others maxed out credit cards. “Many people with AIDS were told by their doctors that they had two to three years to live and they planned their lives

accordingly,” says Menadue. “It is perhaps understandable that they found it hard to embrace a new, unpredictable alternative.”

The unexpected reprieve brought on feelings of anxiety, depression, confusion and anger.

Many people had to grapple with things they never thought they would again: returning to the workforce, socialising — sex.

Then there was survivor’s guilt as individuals thought of friends and lovers who had died, or watched on as the new drugs inexplicably failed others. At the back of minds a question was always present: “Why am I here when so many others are not?”

Further down the track there lay other complications. What wasn’t known in ’96, were the long-term effects of the toxicity of the drugs themselves. “The pioneers who commenced treatment all those years ago paid a price in long-term side effects,” says Dr Darren Russell. The drugs severely compromised the liver, for example. So while, to start with, people on PIs made miraculous recoveries, in later life they began to develop

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comorbidities.

“They turned out not to be the perfect drugs,” says HIV clinician and researcher Professor Andrew Carr, “but they were darned effective at emptying out the wards at that time of the epidemic. They were used for excellent reasons then and, while it became clear they were linked to some serious side effects over time, they saved lives.”

As well as liver damage, Professor Carr’s research showed a link between PIs and raised lipid levels in HIV-positive people, increasing risk of cardiovascular disease and insulin resistance (and diabetes). There also seemed to be an association with the development of abnormal fat redistribution in the body — such as larger bellies and ‘buffalo humps’ on the neck. (See Paul’s story on page 9.)

“This syndrome was called lipodystrophy,” says Menadue.

“In Australia it was estimated that some 64 percent of people with HIV reported some level of lipodystrophy after two years of treatment. I had the syndrome fairly badly by 1998. I first noticed

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that I was putting on weight around my stomach. My stomach was bloated, pushed out from within by fat deposits. With my skinny arms and legs, the bloated stomach gave me the appearance of a starving child. It was not an attractive look.”

Professor Carr presented on these metabolic changes in HIVpositive people on PIs at many international AIDS conferences.

“And while I met with some scepticism at first,” says Carr, “it became accepted that improvements needed to be made in future PIs and in developing new classes of drugs to counter these side effects.”

Nowadays, clinicians are less likely to use PIs as a first-line treatment. “We have greatly improved antiretrovirals, such as the three integrase inhibitors which provide excellent coverage, with very few daily pills,” says Professor Carr. “Protease inhibitors have improved as well, with once-daily dosing, less lipid and gastrointestinal problems, and other side effects.”

Despite the setbacks and difficulties, the arrival of protease inhibitors twenty years ago was — and still is — considered a watershed moment in the HIV/ AIDS epidemic, one that saved many lives. “Including mine,” says Menadue. “Like many of my peers who were struggling on tired regimens of drugs like AZT, dd1 and ddC, I realised that without a breakthrough in treatments I could not survive much longer. Having lived through six AIDS-defining illnesses and seven years with fewer than 50 T-cells, my luck could not hold out for long.”

It was game-changing, says Dr Russell. “I had been working for six years in the HIV field before 1996, and we watched many (mainly) young and middle-aged gay men die in awful, prolonged ways. The cocktail of drugs arrived, and with these new drugs came hope and a realisation that HIV no longer had to be a death sentence. As a clinician, it was wonderful and inspiring to see.

The world went from grey to technicolour in a matter of months.”

From grey to technicolour includes extracts from Through our eyes: Thirty years of people living with HIV responding to the HIV and AIDS epidemics in Australia, available now in melbourne from Hares and Hyenas, Fitzroy and in Sydney from The Bookshop, darlinghurst.

Lickin’ lipo One of the downsides of the early HIV medications — particularly the drugs AZT and d4T — was their exacerbation of the wasting that came along with the damage the virus was doing to people’s bodies.

The loss of fat from the face, arms, legs and buttocks was a challenge to people’s body image and self-esteem.

When the life-saving protease inhibitors came along, people with HIV noticed they were now developing enlarged bellies, breasts (mainly in women), and unusual fat deposits such as the ‘buffalo hump’ on the neck. Later, researchers realised that AZT and d4T also contributed to this.

Getting rid of these body fat changes has proven a difficult task for people affected. Here are two examples of positive people who achieved great results from targeted exercise and nutrition. riGHt FlasHbacK: two-page feature in october-november 2003 edition of Positive Living

Deanna Blegg

My particular goal at the time was to get a trim waist and to get my bum muscles back. I was amazed at what a difference the exercise viral load improved remarkably (and I don’t think it was all to do with the treatments).

PHOTO: CAmErON muIr

made. My T-cells and

Deanna Blegg had less than 100 T-cells in 1996. She suffered a bad bout of viral pneumonia and was in generally poor health. deanna started treatments about this time and after a while noticed that she was developing some of the side-effects associated with lipodystrophy — particularly the fat deposit around the gut and a loss of weight from the bum.

“In 1998 I was pregnant with my child, Tiarae, when someone said something that really got to me. They said that I wouldn’t lose my gut after my pregnancy. ‘We’ll see about that,’ I decided in my head. There were lots of other reasons why I decided to really take fitness seriously. One, of course, was to make sure I was as fit and healthy a mother as I could possibly be.

“In October 2000, I started to train with weights and to get involved with power lifting.

my particular goal at the time was to get a trim waist and to get my bum muscles back. I was amazed at what a difference the exercise made. my T-cells and viral load improved remarkably (and I don’t think it was all to do with the treatments). I got my bum back and I felt so much better about myself. I felt so much more in control of my body and my health. I felt strong; I had a much improved body image and selfesteem. I became motivated to help other positive people to gain the benefits of exercise.”

Since then, deanna has become a role model for positive women (and men) in her commitment to keeping fit. She has become a marathon runner, competing (and often winning) major marathon events around the world — sometimes against people much younger than her. deanna’s body image problems are well and truly a thing of the past.

Paul Caleo incredibly uncomfortable. Whenever I laid down I would feel the pressure on my neck and shoulder, and it was unsightly. The surgery was successful despite leaving a long scar. I’d also developed fat deposits around the front of the neck but the surgeon said that was too difficult to treat.”

There seemed to be no way to get rid of the belly though. “As with the buffalo hump, no amount of exercise seemed to change the size of the belly significantly. I knew it was caused by the accumulation of visceral fat in my stomach so I was not surprised that I had an increased cardiovascular risk as well.”

This year, however, Paul has finally had some success in reducing his belly size.

PHOTO: PAul CAlEO

Paul Caleo was diagnosed with HIV in 1988. After several years on AZT and later d4T, Paul noticed muscle wasting in his arms and legs. Further changes to his body shape began occurring when the protease inhibitor Saquinavir (and later Indinavir) were added to his regimen in 1996. The drugs contributed to Paul developing a belly and a ‘buffalo hump’, a large fat deposit on the upper back and shoulder area.

“The doctors at the time were seeing quite a lot of it with HIV-positive people,” said Paul. “The recommended way to get rid of the buffalo hump was a ‘humpectomy’ or a surgical removal of the fat deposit. I felt I had no choice as the hump was

late last year he joined a ten-week course called ‘Activate’, run by the albion street centre in Sydney. This tailored exercise and lifestyle program includes three exercise groups per week and weekly selfmanagement discussion groups. dieticians

were on hand to support Paul to develop a program that regulated food intake. Paul was encouraged to make healthier food choices — such as excluding fried foods, and sugar and salt.

After completing the ten-week program and following through with the regimen, Paul has lost 17 kilograms, increased his lean body mass, and now finds his energy levels and sense of wellbeing greatly improved. The belly has been reduced, as have his risk factors for cardiovascular disease, diabetes and osteoporosis.

Paul recommends HIV-positive people who want to try the same thing — but who might not have a program where they live — to seek out an exercise physiologist.

People eligible for the government’s Enhanced Primary Care program can get up to five sessions with a physiologist. Ask your GP for more details.

After completing the ten-week program, Paul lost 17 kilograms, increased his lean body mass, and now finds his energy levels and sense of wellbeing greatly improved. The belly has been reduced, as have his risk factors for cardiovascular disease, diabetes and osteoporosis. positiveliving l

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DOCTOR LOUISE ANSWERS YOUR QUESTIONS

what’syourproblem?

How do I take PrEP? simon from st Kilda, Victoria writes: I’m a sexually active (and horny!) gay man who doesn’t always use condoms. I’d like to take PrEP so I can have sex without the worry of getting HIV — what’s the process? dr louise replies: The first thing is for you to have a blood test to ascertain you are HIV-negative.

For the test to be reliable, it’s important that you’re outside the window period for testing — normally six weeks without any incidents of condomless sex. An HIV test during the window period may indicate you are negative when in fact you are positive. (If you happen to be seroconverting when you commence PrEP you may become resistant to the drug.)

This initial consultation is also a time for a full screening for sexually transmitted infections (STIs) and baseline tests of kidney function, liver and blood count.

Truvada — the brand name of the

medication approved for PrEP use in Australia — is not yet available through the Pharmaceutical Benefit Scheme, meaning a private script is required at a cost of $750 for a month’s supply.

The next thing to be aware of when considering PrEP is the potential side effects. The most common are nausea, headache and weight loss. However, these are only temporary and should ease off after a couple of weeks. It’s common, too, for people on PrEP to experience a small drop in bone density. This doesn’t appear to be problematic, though, as the condition doesn’t seem to exacerbate over time.

Also, a small percentage of long-term PrEP users have recorded some drop in kidney function. If kidney function impairs, it would be recommended that you stop taking the drug. Once off PrEP, your kidney function should return to normal.

As well as initial tests for bone health and kidney function, you’ll also be checked for

immunity against hepatitis B (and commence a vaccination course if necessary). Be prepared, also, for questions about recreational drug use. If you’re a regular user of crystal meth, for example, you may need to be aware of tools to help with adherence.

Taking PrEP as prescribed — one pill daily — is crucial for maximum efficacy. Your prescriber will provide tips that can help remind you to take the pill regularly. Once you’re ready to start, it’ll be recommended that you commence PreP at least five days before any instance of condomless sex.

Be aware that PrEP will not protect you against STIs. So once on PrEP, you’ll be monitored every 12 weeks for syphilis, gonorrhoea, chlamydia, hep C — and HIV. Your kidneys and bones will also be regularly monitored. If, at any time, you wish to stop taking PrEP, the recommendation is that you continue on for 28 days after the last episode of condomless sex.

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

First PBS-listed TAF-based combo on 1 april, a new once-a-day combination pill was listed on the pharmaceutical benefits scheme. described as a “breakthrough” next-gen drug, Genvoya is the first to contain the reformulated tenofovir (taF).

Tenofovir 2.0 better targets the immune cells, which allows for reduced dosing. Genvoya contains just 10mg of TAF as opposed to 300mg of the original tenofovir (TDF), meaning less toxicity — meaning a reduced risk of developing kidney and bone damage.

“Studies have shown that TAF

is similarly effective as TDF in virological suppression but is less likely to cause renal injury or bone demineralisation,” said NAPWHA treatments officer, Tony Maynard. “Efficacy is similar but toxicities are reduced.”

Gilead-developed Genvoya’s other components are 150mg of elvitegravir, 150mg of cobicistat and 200mg of emtricitabine.

Taken with food, Genvoya is suitable for people aged 12 years or older, and is appropriate as a first-line treatment option or for people choosing to switch regimens. Common side effects

of Genvoya include gastrointestinal symptoms (notably diarrhoea), nausea, fatigue and headache — these symptoms are usually temporary.

Clinical trials found that no side effects were more common in women than in men. However, as Genvoya’s safety has not been studied among pregnant women,

WyP ImAGE By mETrO WEEKly/POrTrAIT By yurI SAmOIlOV

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Gilead advises: “Genvoya should not be used in pregnant women unless the potential benefits outweigh the potential risks to the foetus.”

Genvoya is not recommended for people with severe kidney damage and should not be used in combination with other antiretroviral drugs, since it may interact with a number of commonly used medications.

In short: the improved compliance a fixed-dose combination such as Genvoya can offer, along with the reduced toxicity, will no doubt prove attractive to some.

H

illary clinton had barely finished her remarks before they were being savaged on social media. eulogising nancy reagan — who died in March, aged 94 — clinton commended the former first lady for starting “a national conversation” about HiV/aids “when nobody wanted to talk about it”. clinton then went on to praise reagan’s “very effective, low-key advocacy”.

Columnist and LGBTI activist Dan Savage was one of the first to shout Clinton down. “This is a fucking lie,” he wrote. “You could only say the Reagans started a ‘national conversation’ about AIDS if terrified, desperate, and dying people screaming ‘WHY AREN’T YOU SAYING OR DOING ANYTHING ABOUT AIDS’ at the Reagans counts. It does not . . . We watched our friends and lovers die while Nancy and Ronnie sat silently in the White House.” Savage demanded Clinton rescind her comments and apologise.

She did, albeit briefly at first, saying she “misspoke”.

In an expanded response, Clinton later admitted that “the Reagans did not start a national conversation about HIV and AIDS”.

The Democratic presidential candidate then went on to recognise the work of the activists, who “reminded us again and again that silence equals death”.

Her mea culpa did nothing to quell the anger — for many people caught up in the horrors of the eighties the Reagans had blood on their hands. Kenneth Bunch, an activist from the San Francisco Bay area, told The Guardian: “Nancy and Ron Reagan were a functional team in the presidency. They are both responsible for the deaths of thousands from HIV in the LGBTI community due to their inaction in the 1980s.”

President Reagan didn’t publicly utter the word “AIDS” until four years into the epidemic.

He didn’t give a speech on the subject until 1987. In that time,

Legacy OF

silence

When Nancy Reagan was hailed as an advocate for action against AIDS, the uproar was immediate. Jake Kendall reports.

quipped: “I just heard the Statue of Liberty has AIDS, but she doesn’t know whether she got it from the mouth of the Hudson or the Staten Island Fairy.” The Reagans were seen laughing while others stayed silent in dismay.

The only time the Reagans appeared to demonstrate compassion was when a teenager — Ryan White — died of AIDS after receiving a transfusion of infected blood. White, unlike the gay men the Reagans refused to acknowledge, was considered an “innocent” AIDS victim.

In tributes following her death, Nancy Reagan was described as “influential”, “a shrewd advisor”. Indeed, the first lady wielded enormous influence

more than 35,000 people had been diagnosed with AIDS in the US and more than 20,000 had died — mostly gay men.

You couldn’t blame the Reagans’ insouciance on ignorance. One of the

first physicians to identify AIDS, Dr Marcus Conant, was quick to air concerns to the White House.

According to Conant, Mrs Reagan was openly dismissive of those who were dying, sending a representative to tell him — that by having sex — “these people [gay men] were breaking the law”.

As more and more of his patients died, Conant again pleaded for help. In a letter to the president he wrote: “It is incumbent on your administration to direct the Centres for Disease Control and the National Institutes of Health to begin efforts to find the cause and treatment for this disease.”

Reagan’s reply simply read: “Nancy and I thank you for your support.”

As well as disinterest, the reagan administration also displayed callousness. When first asked about AIDS — then dubbed the “gay plague” — White House spokesman Larry Speakes responded lightheartedly: “I don’t have it. Do you?”

Speakes continued to goad the journalist who had asked about the disease with wisecracks, implying that — because he brought the subject up — he might be gay himself. When asked whether anyone in the White House, including the president, knew anything about AIDS, Speakes mirthfully retorted (to much laughter): “There has been no personal experience here.”

Homophobia was entrenched in the eighties. Particularly among Republican Party ranks.

The GOP was home to the

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Religious Right; the Moral Majority who believed gay men had brought the disease upon themselves — the “wrath of God” and all that. Reagan’s communications director Pat Buchanan publicly claimed AIDS was “nature’s revenge on gay men”. A GOP bumper sticker of the era proclaimed “AIDS: It’s Killing All The Right People”.

In 1985, the Reagans’ friend, actor Rock Hudson, announced he had AIDS. Hudson approached the Reagans for help in accessing experimental treatment in Paris.

He was rebuffed. The first lady felt it would be inappropriate to “appear to favour personal friends”. Hudson died months later.

During a dinner celebrating the rededication of the Statue of Liberty in July 1986 — at which the Reagans were the guests of honour — comedian Bob Hope

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over the president, perhaps more than any other presidential spouse. It’s likely that, had Nancy asked her husband to address the AIDS epidemic, he would have acted. As it was, tens of thousands died before the Reagans were finally persuaded to do something.

Which is why Clinton’s comments drew such ire. The idea that Nancy Reagan was some kind of advocate for AIDS victims is as fanciful as Cory Bernardi advocating for gay marriage.

“Revisionist history about Reagan must be rejected,” wrote Allen White in the San Francisco Chronicle. “Researchers, historians and AIDS experts who know the truth must not remain silent. Too many have died for that.” He was writing about Ronald Reagan, following the president’s death in 2014. The words apply equally to Nancy . . .

newsouthwalesnews PositiveLifeNSW

Talkin’ ’bout my generation As Liz Sutherland reports, due to a lack of ongoing education, young people remain largely ignorant of the risk of contracting HIV. There are two reactions I get when I mention to someone that I work in the HIV sector. The first is one of genuine surprise and/or mild interest in the reasons behind my move toward this sphere of work. This response, for the most part, usually comes from people aged 35 years and up. The second reaction comes in varying degrees of shock, concern, and confusion — and it’s usually coming from people of my generation: Generation y.

Some of these responses have

played out as a wide-eyed query of whether I’m working within the HIV sector because I’m positive myself, or whether it’s just because I’ve always wanted to get into the not-for-profit domain. Each time I mention that the organisation is peer-led, and that I work and socialise with people living with HIV (PlHIV) on a daily basis, their response is a variation on “Oh! So they’re all going to die soon!”

This is often accompanied by a horrified but well-meaning gaze.

They usually follow this up with the assured belief that, “no one I know has HIV”, as if the disease comes with a red identifying stamp on a person’s forehead.

The young people that I’ve spoken to about the work I do are intelligent, empathetic, rational, caring human beings.

They just know next-to-nothing about HIV. Our education system fails us, major news sources fail us, and information dissemination systems fail us when it comes to spelling out the facts about HIV. I personally believe it goes deeper than that, though. For many young people today, HIV is an unknown quantity — and it’s scary. Because it’s scary, my generation doesn’t want to think about it, or learn more about it, or understand that we’re also at risk. many of us are still young enough to blindly travel through life as if we’re invincible. most of my generation have only heard about HIV from bogeyman-type stories told to us by older relatives or acquaintances issuing warnings of the perils of leading a “risky

Life.mail

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

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

lifestyle”, or from remnants of the Grim reaper ads back in the day, or from a solitary sex-ed class in high school. For some of us, HIV has become colloquialised in jokes and used as a punchline. For others — especially if we’re in established or straight relationships — we

genuinely believe we have no risk of acquiring HIV. We urgently need to resume educating our young people about HIV, and sending positive, accurate information about the risk of transmission. We are a young demographic coming into adulthood with a huge gap in knowledge about how to remain vigilant about our sexual health.

The lived experience of PlHIV should never be minimised or reduced to a punchline. By educating the next generation of young adults about HIV, we will not only reduce the stigma associated with living with the virus, but reduce the potential for a dramatic increase of diagnoses in my generation.

Liz Sutherland is administration officer at Positive Life NSW

Genesis is a weekend workshop for gay men diagnosed with HIV within the last two years. It’s peer-based, which means it’s run by other gay men with HIV who can relate to the experience of a new diagnosis. you’ll learn more about looking after your health, disclosure, HIV treatments, managing your life with HIV — and more. wHen Friday–sunday 24–26 June 2016 wHere 414 elizabeth street, surry Hills (sydney) More inFo

acon’s HiV Men’s Health promotion team 9206 2025/9206 2102 or eMail hivliving@acon.org.au

contact tel

l read Talkabout online here

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

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victorianews CANDELIGHT MEMORIAL

Reflecting and empowering The annual Candlelight Memorial is not only a time to remember but, as Randelle Anderson reports, an opportunity to reinvigorate the fight against HIV. Melbournians came together for the annual international aids candlelight Memorial in May. The memorial is an opportunity to remember all those lost to AIdS since the start of the epidemic. It also serves as a chance to advocate for universal access to HIV treatment, and to fight for a world free of stigma and discrimination.

Since 1983, the memorial has grown to include some 1,200 community organisations in 115 countries. This year’s event — with the theme ‘Engage, Educate and Empower’ — was hosted by living Positive Victoria, in partnership with the Victorian AIdS Council (VAC).

Keynote speaker rowena Allen, Victoria’s gender and sexuality commissioner, encouraged everyone to work A new Victorian campaign aims to promote early treatment and combat stigma. Randelle Anderson reports. the latest treatment campaign rolled out by the Victorian aids council (Vac) and living positive Victoria encourages people diagnosed with HiV to start treatment as soon as possible.

Entitled Treat HIV Now, the campaign promotes the health benefits of commencing antiretroviral therapy upon diagnosis. By using images of real people, the campaign aims to not only convey a positive

candles aloft in Melbourne city square top riGHt Gender and sexuality commissioner rowena allen bottoM riGHt “it’s our generation’s fight to stop stigma”

together and to continue to create a more inclusive future for those living with HIV. “We want everyone, regardless of their HIV status, to engage in breaking down current barriers of HIV stigma and discrimination, and empower the next generation with vital information about HIV and AIdS,” she said.

In addition to the candle-

lighting ceremony, two young people shared their experience of living with HIV; they spoke of the challenges to living well and the struggle to access treatment.

One of the speakers, ruan, spoke of his journey — from receiving his positive diagnosis to now being an advocate and working with other men recently diagnosed HIV.

“We now have PrEP, PEP, and rapid testing, which has created more opportunity for conversation, and opportunities to educate and engage with our peers than ever before,” said ruan. “But it will only get better if we stand up, start creating awareness again, start educating our communities and provide our ‘hivster’ brothers and sisters

with the needed tools and information to help them on their way.” It is only by using all the tools available and through education that Australia will achieve the virtual elimination of new HIV transmissions by 2020. melbourne has already taken steps towards eliminating new cases of HIV, including being the first Australian city to sign on as a Fast-Track City with a commitment to reach the Joint united Nations’ targets on reducing HIV. That is, to aim to ensure that 90 percent of people living with HIV (PlHIV) know their status and are on treatment; and that 90 percent of PlHIV on treatment acquire an undetectable viral load.

It’s a goal that — with perseverance and the right attitude — ruan thinks is achievable. “We can do it — not only to end transmission by 2020, but also to stop HIV stigma and improve the lives of those who are already living with HIV today.

That is our generation’s fight, our responsibility. We owe it to the ones before us, the ones who follow, but most importantly, we owe it to ourselves.”

Why wait? Treat now. impression of how HIV can be managed in one’s life, but also to combat the stigma and shame often associated with the virus.

“What makes this campaign so significant is that it brings a real face to the forefront of this issue and we applaud those who have taken part,” said Brent Allan, CEO of living Positive Victoria. “This is another step forward in battling the silence, shame and stigma that often leaves so many people living with HIV feeling invisible.”

Paired with the images are messages such as “This morning I was diagnosed with HIV. This afternoon I decided to start treatment”; and “I’m HIV-positive.

It’s time to start treatment.” The campaign has two goals: to encourage those who are HIVnegative or unaware of their status to get tested; and to reinforce the advantages of being on treatment.

The campaign grew from the findings of the Strategic Timing of Antiretroviral Treatment

(STArT) study, which cited the indisputable benefits of starting treatment early — including a greatly reduced risk of HIV transmission. In light of the evidence, both living Positive Victoria and VAC felt it important to emphasise what can be achieved through early treatment.

“People who are diagnosed promptly and take the medicine as prescribed can expect to live healthy and full lives,” said VAC CEO Simon ruth.

“We hope this campaign will encourage people to prioritise their health, get tested and get treated.” l For more information about the campaign, including clinics that specialise in HIV, can be found here.

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

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queenslandnews

Knocking out syphilis With an outbreak of syphilis in south-east Queensland, it’s time to remind everyone about the importance of prevention, testing and treatment. Peter Watts and Karen Dorante report.

detected on a test (or be sexually transmitted). rapid syphilis tests are also available from QPP’s rapid clinics in Brisbane and the Gold Coast; results are provided in 15 minutes and no appointment is required.

Even if you have previously been treated for syphilis, it is still very easy to catch again.

There is no vaccine against syphilis. While condoms may provide partial protection, they will provide genital and anal protection, so it’s still important to use condoms for prevention of transmission.

If you’re sexually active, get a yearly test. If you’re having condomless sex, sex with multiple partners (more than 10 within six months), group sex, or using recreational drugs during sex, get screened every three months. If you’re HIV-positive, get tested every three months regardless.

syphilis is easy to catch and can affect anyone, regardless of their sexuality. However, in south-east Queensland a current spike in syphilis notifications among HiV-negative and HiV-positive gay men and men who have sex with men (MsM) has prompted calls from health providers and lGbti agencies for regular testing and increased condom use. wHat is sYpHilis?

Syphilis is caused by the bacteria Treponema pallidum. It is a sexually transmitted infection (STI) which, if left undiagnosed and untreated, can cause very serious long-term health consequences — including heart conditions, nervous system breakdown, even death. wHY sHould i be concerned about it?

In the early stages of infection, symptoms may not always occur, which is why it’s important to test regularly for syphilis if you are sexually active. Syphilis is easy to catch, even if you use condoms for sex, since skin-toskin contact is also a risk if syphilis sores (chancre) or a skin rash are present.

Chancre sores are generally small, reddish, open lesions and can occur just about anywhere: inside the mouth, on the lips, or in the genital or anal areas (and in the rectum) — making them sometimes hard to see, and usually they are painless.

These sores often heal and disappear within a few weeks, even if left untreated, but a person can still pass on syphilis without these present. Other symptoms may also emerge, such as swollen glands, fever,

headaches, fatigue, muscle and joint aches and pains, weight loss and hair loss. A rash may also occur on the palms and the soles of feet or other parts of the body.

Sexual transmission usually occurs during the primary (twothree months) and secondary stages (two-six months) of infection, so syphilis is highly contagious during these times.

Transmission may also occur within two years of infection (during early latency).

More inFo l See the drama down under website, and don’t forget to set yourself a reminder for regular tests every three months if you are highly sexually active l Visit your nearest sexual health service

The progression of syphilis can occur more quickly if you also have HIV, which can make syphilis harder to treat. like all infections, it is best to diagnose and treat syphilis early, before it progresses to more serious stages. testinG and preVention Ask your doctor or sexual health clinic for a test if you think you’ve been exposed. Bear in mind there is an incubation period of two-to-three weeks before an infection can be

treat earlY to KnocK out sYpHilis, beFore it KnocKs You out Syphilis is easy to treat (and cure) in the early stages 1 and 2 (with penicillin injections). If left untreated, the condition enters stage 3 of latent infection, with no obvious symptoms. The infection at this stage is causing serious damage to internal organs such as the heart, brain, liver, nerves and eyes. This can lead to blindness and difficulty walking, talking and eating. By now, a person has developed tertiary (end stage) syphilis.

Tertiary syphilis is very difficult to treat, and is life threatening.

l Contact your local GP l Contact QPP on 3013 5555 or (toll free) 1800 636 241 or info@qpp.org.au l Contact QuAC on 3017 1777 or (toll free) 1800 177 434 or info@quac.org.au

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

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POSITIVE VOICES POSITIVE PEOPLE SHARE THEIR EXPERIENCE OF LIVING WITH HIV

Serodiscos TALK TREATMENT AS PREVENTION risky for me to be concerned. I sort of take that as part of the relationship. I can’t see how I can have a loving relationship with [my wife] and be preoccupied with fear about becoming HIVpositive. It just seems incompatible.

Magnetic couples (partners of mixed HiV status) share their thoughts on treatment as prevention and the effect it’s had on their relationships.

John +

Merlin +

I consistently came back with an undetectable viral load so after a while my partner and I agreed that we could fuck without a condom. As a couple we agreed that sex was better without condoms. Being in a relationship changed the rules for us. We both agreed that outside the relationship we stick to using condoms.

I just think it’s my responsibility to not be the person that makes [my partner] positive. If there was any question of me going off my medication because it suited me health-wise, I wouldn’t, because that protection for him wouldn’t exist anymore.

imran -

I think that’s probably why I’m in a relationship where I’m not really affected by my partner being HIV because he’s on medication. It’s keeping him undetectable. Because the medication drops the viral load they’re not really passing on the HIV to a negative person if they’re on medication.

blake +

I decided many, many years ago that [sex with negative men] it’s just a no-go, which kind of narrowed my field down to just positive men. I guess I’ve been living a fairly limited view of how all this had to work for me and now I just feel freer. That’s big.

The landscape has changed.

There’s treatments, there’s pathways. There’s ways forward.

And it gives me space for relationships to happen, to evolve that I guess we once thought weren’t possible.

danno -

And then that study [Hptn052] came out so then we were like relieved, really, and able to kind of go ahead [and have condomless sex]. I could sit there and go: “These

simon -

are the facts. If [my partner] has his medication every day . . . I’m willing to take the risk because I know he’s doing everything he possibly can to keep me safe.”

Georgia +

Oh, I think [TasP] is a positive thing. Especially with the research that shows the risk of transmission is lowered. I can speak as a positive person; the fear of infecting someone else is just overwhelming, especially someone you love. And so [TasP] would help you to be able to relax and enjoy your sex life, enjoy your relationship with your partner.

[Condomless sex] was very scary at first, but it’s something that has to be negotiated as a couple. But now having seen the release of the [australian HiV

strategy, which endorses TasP] and understanding that this is a common consensus, it’s taken the uncomfortableness away, that fear away. To me, it’s even safer now, if you know your status and if you have an undetectable viral load.

Quentin -

When Sean disclosed he also told me he is healthy and his viral load is ‘undetectable’. I had heard the term before, but didn’t know what it would mean for me and our relationship. I did a bit of research and talked to my friend who works for a community organisation. A low viral load would decrease my anxiety about getting HIV, but not in a way that changes how we have sex. It’s early days so we will use condoms for now.

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oliver +

I’m slightly paranoid about it. But [my partner’s] going, “Oh, the partner study says that, if you have an undetectable viral load, it’s practically impossible to give HIV to your partner.” Even my doctor tells me there’s no risk in it. But I am a little insecure about that. I take my treatment regularly, because even though [that fear] is deep down in the back of your brain, you know that treatment is one of the best preventative measures.

adam -

I think that we have a fair bit of confidence around [her] health and, you know, a very minuscule risk of transmission. I don’t actually feel that intimate contact with my partner is significantly

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It’s natural to want to have sex without condoms because it just feels nicer. I discussed viral loads with my doctor, and new studies have come out showing that, if the viral load is down as undetectable, the probability of getting HIV is extremely, extremely low.

daniel +

I currently have an undetectable viral load. The risk of passing on HIV is minimal. We’ve reached a point in our relationship where we’ve decided not to use condoms. We’ve discussed the risk and [my partner] is OK with this. I would love people to know that there is the opportunity and the potential to have a loving relationship with someone who is negative. We need to build a bridge between poz and neg guys.

Thanks to the participants in the uNSW’s Centre for Social research in Health serodiscordant couples study You, Me & HIV, and contributors to Positive life NSW resource, SeroDisco.

THE

backpage

Cumquat may FOR TACKLING

STIGMA

n Don’t be afraid to call someone out — challenge attitudes, beliefs and behaviours that perpetuate HIV stigma; and use complaints procedures if need be n Break the silence — talk about your fears and concerns with family, friends and sexual partners n Be informed — in order to stamp out stigma it is essential to give clear, unambiguous messages about how HIV can and cannot be transmitted n Adopt a f**k you attitude — where it is safe to do so — disclose without fear or shame for more InformAtIon AnD ADVIce VIsIt enuf.org.au

there’s no waste with a cumquat (or kumquat) as it can be eaten completely — even the peel, which is rich in essential oils, antioxidants and fibre. native to southeastern parts of mountainous china, a perfectly ripe cumquat should be firm, smooth and a brilliant orange colour. inside, the fruit should be juicy. cumquats contain vitamins a, c and e; they protect against cancer, degenerating diseases (such as alzheimer’s and parkinson’s) and infections. use in marmalades, jams, smoothies and . . . mojitos!

THESE SPROUTS HAVE CLOUT unsurprisingly, brussels sprouts are native to belgium, specifically to a region near its capital, brussels, after which they’re named. cousins to the cabbage, brussels sprouts grow in bunches of up to 40 a stem on a plant that can grow as high as three-feet tall. brussels sprouts have a bitter-sweet flavour that kids adore. it is scientifically proven that, when eaten regularly, brussels sprouts will put hairs on your chest. (those last two facts may be false.) what’s true is that — as a cruciferous vegie — brussels sprouts contain antioxidant compounds that help prevent cellular damage. delicious roasted, baked, stir-fried or lightly steamed. positiveliving l

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QUOTEUNQUOTE

Stigma is the big issue.

What we need to do is to find a way to destigmatise HIV and to educate the educators in schools so that HIV becomes a part of all of our existence.

We must start to embrace [HIV] and take it out of the closet.

Annie Lennox — singer and UNAIDS ambassador

GOFIGURE q

17.1 million

people living with HIV do not know they have the virus.