positiveliving FOR PEOPLE LIVING WITH AND AFFECTED BY HIV | WINTER 2018
IS NOT A CRIME
TIPS 6 FOR BECOMING
THE PEOPLE’S CHAMPION
DAVID COOPER 11
Some signs and solutions
AN HIV WARRIOR
CYBER GRINDR CONCERNS
AN INVITATION TO DISCRIMINATE
Will your privacy be compromised when medical records are stored in a centralised database later this year?
Why let being HIV-different get in the way?
HIV+THE BODY 10
16 positiveliving ISSN 1033-1788 EdITOr Christopher Kelly
david menadue Vicky Fisher CONTrIBuTOrS João Florêncio, Olivia Ford, Jake Kendall, Neil mcKellar-Stewart 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: email@example.com 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 2018 subscriptions
l Positive Living is a magazine for all people living with HIV in Australia. Contributions are welcomed, but inclusion is subject to editorial discretion and is not automatic. The deadline is 21 days before publication date. receipt of manuscripts, letters, photographs or other materials will be understood to be permission to publish, unless the contrary is clearly indicated. l material in Positive Living does not necessarily reflect the opinion of NAPWHA except where specifically indicated. Any reference to any person, corporation or group should not be taken to imply anything about the actual conduct, health status or personality of that person, corporation or group. All material in Positive Living is copyright and may not be reproduced in any form without the prior permission of the publishers. l The content of Positive Living is not intended as a substitute for professional advice.
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ancient virus affecting thousands a virus dubbed the “cousin of HiV” is affecting thousands of aboriginal adults in remote australia. T-cell lymphotropic virus type 1 — or HTVL-1 — to give it its scientific moniker, is a cancercausing blood-borne virus that can be sexually transmitted and passed from mother to child. Researchers in Alice Springs estimate that in central Australia alone around 5,000 Aboriginal adults have HTVL-1. Cases have also been discovered in Adelaide and Perth. Endemic to countries with ancient cultures — such as Japan, Peru, Brazil, South America and Africa — Australia has the highest levels of HTVL-1 in the world. Concern over the Australian infection rate (which is 1,000 times the rate of anywhere else in
the world) has prompted the federal government to establish an $8 million taskforce of doctors and Aboriginal health organisations to respond to the virus, for which there is no vaccine. The World Health Organisation has also held preliminary talks in an effort to understand the epidemiology of HTVL-1 and to discuss what actions need to be taken. Most people are unaware they have the virus as they have never been screened for it, prompting calls for increased testing. “We have a test that is reliable and quick, we just need to roll it out and those that are positive need to be supported,” said HTVL-1 expert Dr Fabiola Martin from the University of Queensland. Researchers are currently monitoring five remote
all-time low reached
There have been no Australian babies born with HIV through motherto-child transmission (mTCT) since 2013, despite an increase in HIVpositive pregnancies. While the milestone should be commended, researchers at James Cook university in Queensland warn against complacency if virtual elimination of mTCT is to be achieved. "Elimination of mTCT is not a single event but an ongoing process,” they say. “Continual, consistent and accurate data about HIV-exposed pregnancies is vital to monitor sustained and improved efforts toward this goal."
pnG drug crisis eases papua new Guinea’s antiretroviral drug shortage has been abated. A shipment of the life-saving medication has arrived in Port Moresby, much to the relief of the island’s HIV community. The level of available drugs dropped to critical, eating into PNG’s buffer stock. Amid the crisis, HIV advocacy groups warned that if people didn’t receive treatment soon, some may die. The drug shortage has been blamed on recent government
budget cuts. In 2018, $1.43 million was allocated toward the supply of antiretroviral treatment. Local HIV organisation Igat Hope estimates that $6 million per year is needed to fund PNG’s treatment needs. There are around 44,000 people with HIV in PNG. The island has disproportionately high rates of HIV for the region, recording about 95 percent of all cases of HIV in the Pacific. In 2016, 1,100 Papua New Guineans died of AIDS-related illnesses.
Aboriginal communities to better understand the spread of the virus and to develop a public health response. Meanwhile, health experts have criticised multiple governments for failing to address the syphilis epidemic affecting Aboriginal and Torres Strait Islander populations. The spread — which began in 2011 in far
north Queensland before moving into the Northern Territory, South Australia and Western Australia — has so far claimed the lives of six infants. “The consequences of not having had a prompt response on the part of the government is appalling,” said Olga Havnen, CEO at the Danila Dilba health service in Darwin. “I don’t
understand why it’s OK to ignore this.” Havnen blames federal funding cuts to Indigenous sexual health programs for facilitating the outbreak. “If it had happened anywhere else in suburban Australia, do you think they’d be arguing about the money?” Between 2012 and 2016, syphilis rates doubled among nonIndigenous communities but tripled among Aboriginal and Torres Strait Islander people. “In this day and age, in a medical system that’s had a cure for [syphilis] for many decades, the fact that we are still seeing an outbreak of such an easily treated infectious disease really says a lot about our failures as a community to deal with the health issues in our Aboriginal communities,” said Omar Khorshid, president of the Australian Medical Association.
Super-gonorrhoea found in Qld and WA two cases of a multidrug resistant strain of gonorrhoea have been discovered in Queensland and Western australia. Usually treated with a combination of antibiotics, so far, treatment has been unsuccessful. One of the Australians is thought to have contracted the STI in South-East Asia. The Australian diagnoses follow a UK case dubbed the world’s “worst-ever” incident of gonorrhoea. Once again, the strain was contracted during a
visit to South-East Asia. Initially resistant to first-line treatments, the strain was eventually treated with another antibiotic, ertapenem. “These latest cases and the recent one in the UK
appear to be the first reported that are resistant to all of the antibiotics that have been in routine use against gonorrhoea,” said Australia’s chief medical officer, Professor Brendan Murphy. Professor Murphy is urging people to prevent the spread of the superbug by using barrier protection such as condoms and dams when having sex overseas. Gonorrhoea symptoms include a sore, dry throat, genital and anal pain, and abnormal discharge.
These latest cases and the recent one in the UK appear to be the first reported that are resistant to all of the antibiotics that have been in routine use against gonorrhoea.
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scientists are trying to understand why women with HIV are more susceptible to HIV-related heart disease than positive men. While men with HIV are one-and-a-half times more likely to suffer a heart attack than their negative counterparts, the risk doubles when comparing women with HIV to their negative peers. The clue to why could be found in the coronary arteries where plaque manifests itself differently in women with HIV than in men. according to new research, we could be edging closer to a long-term preventative vaccine for HIV. A single injection protected monkeys against a simian strain of the virus for at least 18 weeks, suggesting the jab could offer people months of immunity. It is hoped that the researchers’ findings will lay the groundwork for a preventative vaccine that could be administered as infrequently as once a year. Meanwhile, a long-acting oral treatment that could be taken at home is under development. If successful, the ultra-long-acting therapy would improve treatment adherence and help people with HIV avoid viral resistance. One capsule would deliver a controlled release of three highly potent antiretrovirals for a week. prostate and lung cancer will become the most frequently diagnosed cancers in people living with HIV if current trends in new cancer diagnoses continue, analysis shows. The projected changes in cancer diagnoses are a consequence of people growing old with HIV and the success of antiretroviral therapy in preventing immunosuppression that leaves people vulnerable to AIdS-defining cancers such as Kaposi’s sarcoma and nonHodgkin lymphoma. it’s been discovered that half-a-dozen novel compounds derived from sea sponges are able to inhibit HIV in infected cells, according to a newly published study. These compounds attack HIV’s ability to grow in a way that is different from current drugs. The discovery may help researchers identify weaknesses of the virus that could be exploited by some future therapy.
living longer, but ageing sooner although people with HiV are living longer, agerelated diseases are setting in earlier. Long-term survivors now in their 50s and 60s are developing age-related conditions — such as heart, liver and kidney disease, as well as certain cancers — at a rate significantly higher than negative people of a similar age. “After we started successful therapy that suppressed the virus and extended lives, we began to notice that people were getting diseases associated with ageing sooner than their chronological age would indicate they should be getting them,” said Anthony Fauci,
director of the US National Institute of Allergy and Infectious Diseases (NIAID). The people particularly affected are those diagnosed pre-’96 — prior to the arrival of
highly active antiretroviral therapy (HAART). Without antiretroviral drugs, HIV causes the body to be under constant immune activation. “With most infectious invaders, the immune system responds and then is supposed to rest, like a fire engine waiting to come out when there is a fire to be fought,” said Carl Dieffenbach, also of the NIAID. “With HIV, those firetrucks keep driving around for fires, even when there are none.” Many researchers believe it is this high level of immune activity that is the underlying cause behind the accelerated rate of age-related conditions.
U=U is not getting through A recent study confirms that fear of HIV continues to trump scientific knowledge of the virus. As Michael Rodriguez argues, such prejudice wreaks havoc on the lives of people living with HIV. according to a recent study in the Journal of the International AIDS Society, a disturbingly high number of HiV-negative gay men doubt the veracity of the statement “undetectable = untransmittable”. If you haven’t heard that motto before, it’s pretty simple: people living with HIV who are on medication and whose viral loads have reached undetectable status cannot transmit the virus to their sexual partners. The 2018 study on U=U ended up recruiting 12,222 eligible gay and bisexual men to share how they really felt about the slogan, which is gaining consensus among the medical and scientific communities, though that consensus has not extended to the general population. The men recruited were asked to give four possible answers on how accurate
they believe the slogan to be: completely accurate, somewhat accurate, somewhat inaccurate and completely inaccurate. Only one-third of HIV-negative men and men who didn’t know their status believed the statement to be either completely or somewhat accurate, compared to 70 percent of HIV-positive men. Among HIV-negative men, those who were on PrEP, those who tested for HIV every six months, and those who engaged in condomless anal sex with HIV-positive men, were more likely to believe that “U=U”.
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As an HIV-negative man, I understand the myriad reasons for not yet believing that undetectable = untransmittable. It’s not actually about learning something new, but unlearning lifelong messages that just being gay, and loving other men, would most likely lead to acquiring HIV. This fear continues to wreak havoc on the lives of people living with HIV. While advances in medicine have made life with HIV easier in many ways, stigma and fear around the virus have failed to progress at the same rate. Aside from individual interactions with HIV-positive people, the level of fear in the world continues to make it easy for politicians and people in the criminal justice system to punish those living with HIV just for living. Though it’s easy to see the root of this long-held stigma, that doesn’t excuse its survival. In the era of U=U, believing that HIV-positive people with an undetectable viral load can pass the virus on is akin to denying climate change. The scientific consensus is there. mOrE NEWS AT pl online
Invitation to discriminate When news broke in april that Grindr shared the HiV status of its users, there was rightly uproar. but, as João Florêncio argues, that the company passes on data to external parties isn’t the point. There has been an enormous groundswell of public condemnation after reports emerged recently that hook-up app Grindr has been sharing data on the HIV status of its users with two external analytics companies it was working with. Most of the uproar has focused on data ownership and privacy. But to get to the heart of the problem, it pays to rewind the story and look at how and why Grindr introduced HIV status as one of the stats its users are invited to disclose. Since the 1980s, HIV has played a central role in the development of gay masculinities — and even today we’re still compelled to define ourselves according to it. As many people have said before: “We are all living with HIV”, whether by living with the actual virus or by
being expected to position ourselves in relation to it — that is, to state on which side of the positive/negative binary we fall. No surprise then that in 2016, Grindr introduced “HIV status” as one of the “stats” its users are invited to provide about themselves. Pitching the decision as a way to “support the health and safety of users worldwide” was part of Grindr’s move towards rebranding itself as a company that promotes “justice, health, safety, and more for LGBTQ individuals around the globe”. But given that HIV stigma remains prevalent worldwide, and that Grindr profiles’ stats are used as a way of filtering out “undesirable” profiles, Grindr’s intention of ending stigma by inviting people to disclose their HIV status may have a very different impact. HIV status is just one of a list of measures against which Grindr users can define themselves. The full list reads as follows: l Age l Height l Weight l Body type: Toned, Average, large, muscular, Slim, Stocky
l Position: Top, Vers top, Versatile, Vers bottom, Bottom l Ethnicity: Asian, Black, latino, middle Eastern, mixed, Native American, White, South Asian, Other l relationship status: Committed, dating, Engaged, Exclusive, married, Open relationship, Partnered, Single l my Tribes: a long checklist of categories, including Trans, discreet, and “Poz” (HIV positive) l I’m looking For: Chat, dates, Friends, Networking, relationship, right Now Below this list are two sections: one where a user can choose whether to display their gender identity and preferred pronouns, and one where they can display their HIV status and the date they were last tested. None of these categories has to be selected or filled in for a user to have an active profile. But Grindr doesn’t just invite users to define themselves by these characteristics — it allows them to filter the profiles they see to show only those meeting their preferences. And there are all sorts of categories Grindr doesn’t
offer its users — “hairstyle”, “favourite colour”, “favourite superhero”. So why these ones? Giving users a choice of defining features is never a neutral decision. Instead, the set of choices provided always indicates some judgement about what ought to be valued. In a nutshell, all systems of classification are ideological. By compelling its users to either state their HIV status or withhold it, Grindr enforces a norm that someone’s HIV status isn’t just something for others to care about, but a legitimate characteristic on which to base the choice of a sexual or romantic partner. This is out of step with the reality of life with HIV today. We’ve seen incredible progress in the treatment and prophylaxis of HIV, before and after exposure. Having an undetectably low viral load, now achievable with antiretroviral drugs, means someone won’t be able to transmit the virus — and condoms and PrEP are highly successful at preventing HIV infection. Yet Grindr still offers HIV status as a marker of identity. That the company has shared the resulting data with external
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parties isn’t the point. By making HIV status one of the stats available to its users, the company continues to invite them to disclose their HIV status and to discriminate on the basis of other users’ answers. Granted, disclosure of HIV status is not compulsory, but the very invitation to do so puts HIVpositive users in a bind: if they disclose it, they’ll have to face being potentially discriminated against; if they don’t give an answer, they will likely be seen to be hiding their status; if they answer “negative”, they’ll have to commit to lying. Whichever way users answer it, Grindr’s invitation to disclose HIV status arguably still positions HIV-positive folk as solely responsible for halting HIV transmission. That is too heavy a burden for one partner to carry. In the end, sex and pleasure always involve decisions on assessing and managing risk — and those decisions are incumbent on all people involved, regardless of “status”. This article was originally published in The Conversation and can be viewed here.
A new centralised, digital database housing health information has some people worried. And as Jake Kendall reports, it’s understandable why some marginalised groups would be concerned.
Alliance, issued this statement: “For sex workers, getting a STI or HIV test under the new MHR could lead to rapid criminalisation and charges. Several states in Australia continue to criminalise sex workers living with HIV and some STIs. [MHR] will undermine our health and discourage testing.” Positive Life NSW is another community organisation voicing concerns. “Positive Life believes the ownership and confidentiality of your personal electronic health data must remain under your full control as a person living with HIV,” said Dejay Toborek. “How can doctors and health services keep confidentiality for people living with HIV, people who inject drugs, sex workers and other vulnerable populations if law enforcement authorities can access the information? The safe, confidential space of a nonjudgemental doctor’s consulting room is now at risk.” Of course, there is an upside to the scheme. Centralisation and
digitisation of information means your health record can be accessed anywhere, which is particularly useful for people with HIV who are in the care of multiple healthcare providers. In an emergency, healthcare providers will have instant access to your medical history and be better able to manage your care. You’ll also be able to organise script repeats online. “My Health Record provides many benefits to patients,” said Minister for Health, Greg Hunt, “including reduced duplication of tests, better coordination of care for people with chronic and complex conditions, and better informed treatment decisions.” There’s no doubt that the primary use of MHR holds many advantages for people with HIV. It is the secondary use of the health data that has people worried. According to Joshua Badge of the Victorian AIDS Council, such anxieties are understandable. “My Health Record is a wellintentioned policy, but its execution discourages
approach would involve marginalised groups from addressing the concerns, issues confidently accessing and perceived obstacles.” healthcare,” he said. “It stokes So, what to do? The message fears of the forced disclosure of from Positive Life is clear: if in confidential health information doubt, opt out. “People living — such as results of sexual health with HIV from vulnerable tests and HIV status — which populations, such as sex workers, undermine public health people who inject drugs and outcomes and the individual others will be better to opt out of wellbeing of people in the LGBTI the My Health Record,” said community.” Toborek. “If you do not opt out, Between now and December, your consent is implied.” Badge the government will implement a agrees: “People’s consent is communications strategy in a bid to allay people’s concerns and sell assumed without their having all the relevant the benefits of the scheme. Member of the FOR A MHR information. It’s critical steering group for the FACTSHEET that people — especially people from gender and national expansion of PRODUCED BY sexual minorities and the MHR, Dr Edwin Kruys, said more must be POSITIVE LIFE people living with HIV done than that if the CLICK HERE — are made aware of the potential risks of the My critics are to be won over. “There is a large group of sceptics. Health Record system ahead of the three-month opt-out window.” It appears that so far neither the That window will be open from ADHA nor the Department of 16 July to 15 October. After that, Health have been able to get this every Australian who has not group on board. The usual opted out will have a record promotional material touting automatically created for them. benefits is unlikely to change n more, see page 12 anything. A more effective
The cornerstone project of the Australian Digital Health Agency (ADHA), My Health Record (MHR) will contain everything from scripts to pathology reports, a list of medical conditions, referral letters, discharge summaries, psychologists’ notes, results of sexual health screenings, and HIV status. While there will be security settings allowing you to restrict access to specific documents, these can be overridden in certain circumstances by law enforcement agencies. The Australian Tax Office and the Australian Bureau of Statistics have also expressed an interest in accessing the data. As have research institutes and clinicians’ groups. Then there’s the very real concern that your private information will be hacked. There is a risk, say experts, that fear of such breaches of privacy may cause people to avoid seeking treatment — especially when it comes to sexual health. Indeed, through Twitter, the Australian Sex Workers Association, Scarlet
THE SAFE, CONFIDENTIAL SPACE OF A NON-JUDGEMENTAL DOCTOR’S CONSULTING ROOM IS NOW AT RISK. positiveliving l 6 l WINTEr 2018
People living with HIV are more likely to suffer depression but, as Neil McKellar-Stewart reports, symptoms can be reduced through a range of interventions.
n HIV diagnosis is a profoundly traumatic experience, the psychosocial effects of which burst out like an atomic blast across the personal landscape of most people living with HIV. If the diagnosis is close to the time when the person acquired HIV, the trauma may be compounded by severe physical illness associated with seroconversion. For many people, the experience will trigger a period of significant depression. Similarly, people who have lived with HIV for many years may also suffer depression. Of course, all of us experience times in our life when we may be feeling flat or down. This is quite normal and is commonly related to periods of change, stress or uncertainty. Most people, however, come out the other side and return to a level mood state. Depression is different altogether. Major depression feels like being stuck in a deep, dark hole with no means of escape, substantially impairing a person’s ability to function or cope with day-to-day living. It is way beyond sadness. When we are sad we can be distracted from our mood by simple pleasures in life. With depression, we experience a persistent and all-pervading loss of pleasure in anything. The unpleasant reality is that depression occurs much more frequently in people living with HIV than in the general population. In fact, clinical depression is the most commonly observed mental health disorder among those diagnosed with HIV. Studies have found that the percentage of people with HIV diagnosed with clinical depression ranges between 15 percent and 40 percent — this is around two-tothree times higher than matched individuals living without HIV. In 2014, La Trobe University researchers undertook an online survey which measured depression, anxiety and stress in gay and bisexual men living with HIV in Australia. It found 21.5 percent had severe or extremely severe depression. The depression scores for these men with HIV were 1.7 times higher than found among their negative peers.
Weathering the blues The La Trobe researchers identified a key factor associated with the high depression scores: internalised stigma. This caused people to hide their HIV status from others and made them feel dirty, guilty and ashamed. Results from an online survey of men who have sex with men in the UK and Ireland showed a similar trend. More than half of the men (58 percent) reported symptoms
of depression, with internalised stigma the most frequent cause. As a result of such findings, some jurisdictions have adopted guidelines for the regular monitoring of people with HIV for symptoms of depression. In Australia, for example, the Australasian Society for HIV, Viral Hepatitis and Sexual Health Medicine recommends that: “People living with HIV should be
screened for symptoms of depression, anxiety, drug and alcohol issues, trauma, adjustment difficulties and risk of self-harm within the first three months of receiving an HIV diagnosis, and thereafter annually.” It’s not just stigma and feelings of low self-esteem that can lead to depression among people living with HIV. Many antiretroviral medications to treat
Depression: the signs and the solutions THE SIGNS
n Diminished interest in everyday activities n Significant increase/loss in appetite/weight n Insomnia/excessive sleep n Changes in speed of thought and movement (agitated or slow) n Fatigue or loss of energy n Feelings of worthlessness or guilt n Difficulty with thinking, concentrating, or making decisions n Recurrent thoughts of death or suicide
n Seek help and support n Stay in touch, don’t withdraw from life n Be more active, take up some form of exercise n Face your fears n Don't drink too much alcohol n Eat a healthy diet n Have a routine n Take up meditation or yoga
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HIV can cause emotional or mental problems as side effects. These side effects may diminish or disappear after a period of days, weeks or months but can also remain long-term. In some cases, changing drugs may be the only option. Treating depression in people with HIV is critical. If left untreated, depression can cause HIV-positive individuals to stop taking their medication, to stop attending medical appointments, and to actively disengage from healthcare in general. This puts the individual at risk of developing a detectable viral load. Having depression promptly diagnosed and treated is vital in order to reduce the risk of other health issues which are associated with untreated depression, such as acute heart disease, stroke and diabetes. Recent evidence also suggests untreated depression over many years may lead to high levels of inflammation in the brain which, in turn, contribute to permanent neurodegeneration. So, if you are living with HIV and depression, seeking support to reduce the symptoms is a high priority. Talk with your HIV clinician and, if you’re concerned, request that a screening test be conducted. If depression is diagnosed, the good news is there are plenty of treatment options available to help you cope with the condition. Lifestyle changes found to be effective in treating depression include psychotherapy, cognitive behaviour therapy, stress management, improved sleeping habits, regular exercise and exposure to sunlight. Massage and acupuncture have also been found as good alternative therapies to treat depression, as have meditation, mindfulness and yoga. Antidepressant medications can also be used to treat depression. (If you are on antidepressants and are also living with HIV, close attention must be paid to any interactive side effects.) So, while all may seem hopeless, it’s important to remember that depression can be successfully treated and symptoms significantly reduced through a variety of interventions. The first step is to seek medical support so as to receive the right treatment for you. n If you’re suffering from depression, you can seek support at beyond blue and lifeline australia
Fighting for HIV justice Writer and advocate Olivia Ford argues that the modern realities of living with HIV are being overlooked by the criminal justice system.
dvances in global HiV prevention, care, science, and treatment in recent years — and the potential benefits to the lives of people living with, at risk of acquiring and affected by HiV— are astounding.
Effective HIV treatment has made healthy and normal lifespans a reality for millions of people living with HIV across the globe, and treatment and human rights advocates continue to work to secure access to these lifesaving treatments for everyone living with HIV.
The science is clear: when taking effective anti-HIV medication, a person living with HIV cannot transmit the virus to a sexual partner. If they are pregnant, the chance that their baby will acquire HIV during birth can drop to less than one percent. Even without being on
treatment or using a condom or other barrier, HIV is difficult to transmit. And if HIV transmission occurs, the person acquiring HIV has a serious but manageable disease and can expect to live a normal lifespan with adequate treatment. Yet these soaring advances — which have saved and
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extended countless lives — have all-too-often been misunderstood, misrepresented, or ignored within criminal justice systems the world over. so what is HiV criminalisation? HIV criminalisation is a term that describes the unjust use of the
criminal law (or similar laws, such as public health, civil and/or administrative law) to punish and control the behaviour of people living with HIV based on their HIV status. Behaviour in these cases is most often consensual in nature. This can happen through HIVspecific criminal statutes, or by applying general criminal laws governing offences such as assault (including sexual assault), reckless endangerment, or even attempted murder, to instances of potential or perceived exposure to HIV. Use of the law in this way ignores robust and widely available scientific and medical evidence related to HIV and its transmission, and to the realities of living with HIV in the modern era of the epidemic. HIV criminalisation is a growing, global phenomenon. However, it seldom receives the attention it ought to, considering not only that it undermines the HIV response by compromising public health and the human rights of people living with and affected by HIV, but also that there is no evidence of any benefit from these laws. In many instances, laws that criminalise HIV are exceedingly vague or broad — either in their wording, or in the way they have been interpreted and applied. This opens the door to a host of potential human rights violations against people living with HIV. Usually these laws are used to prosecute individuals who are aware they are living with HIV and allegedly did not disclose their HIV status prior to sexual relations (HIV non-disclosure); are perceived to have potentially exposed others to HIV (HIV exposure); or are thought to have transmitted HIV (HIV transmission). The laws are often enacted, and applied, based on myths and misconceptions about HIV transmission — as well as stigma against communities living with or affected by HIV. Some of these laws allow prosecution for acts that constitute no, or a vanishingly low, risk of HIV transmission: spitting, biting, scratching, oral sex, sex with condoms or a low viral load. In many countries, a person living with HIV who is found guilty of other “crimes” — notably, but not exclusively, sex work, or someone who spits at or bites law enforcement personnel during their arrest or incarceration — often faces enhanced sentencing even when HIV exposure or transmission
was impossible, or virtually impossible. Two significant problems with most HIV criminal laws and prosecutions are that they typically focus on proof of HIV disclosure, rather than on whether a person had any intent to do harm or whether a perceived harm (i.e., transmission) actually occurred; and felony punishments and severe sentences sometimes treat any level of HIV exposure risk as the equivalent of murder, manslaughter, or rape with a weapon — a patently false and dangerous equivalency. One key aim in reforming HIV criminal laws can be to challenge these two problems by advocating for the corresponding core legal principles that convictions must require proof that the person intended to do harm; and the degree of punishment must be closely related to the level of harm. As of February 2018, HiV
reinforcing a society’s prejudices, and HIV criminalisation is just one lens for witnessing that insidious process. Because HIV criminalisation stories may involve salacious details of “sex, drugs, and crime,” media outlets may use dramatic headlines highlighting those details to grab attention in busy media markets. The images and language used in these stories increase the notoriety of specific defendants, and can serve to further marginalise and target individuals who are already members of vulnerable groups. Where do the criminalisation laws come from? The world’s first HIV-related prosecutions, and eventually HIVspecific laws, occurred in the mid-late 1980s, when HIV was truly a death sentence for millions of people who acquired the virus. These legal actions grew out of lack of control of the
Who do these laws target? Under these overly broad statutes, virtually anyone who is living with HIV could be prosecuted. Laws that criminalise people living with HIV disproportionately affect communities that already face undue levels of policing, incarceration, and human rights abuses — including people of colour; sex workers; women, inclusive of transgender women; and people living at the intersections of these identities. These laws are often framed as protecting women “victims” from dishonest partners. But laws that criminalise HIV exposure do not protect women. Women living with HIV may face violence if they disclose their HIV status, but risk arrest and prosecution if they do not disclose — or they do disclose, but their partner claims they did not. Many women have been arrested or sent to prison based on accusations by former
“he said/she said/they said” battle in court, in which the person who knows their HIVpositive status usually loses. HIV criminalisation is at odds with public health objectives, such as UNAIDS’ 90-90-90 goals for ending epidemic HIV. Anecdotal evidence as well as several analyses have suggested that fear of prosecution may deter people — especially those from communities highly vulnerable to acquiring HIV — from getting tested and knowing their status, because laws apply mainly to those who are aware they are living with HIV. HIV criminalisation can also block access to HIV care and treatment, undermining counselling and the relationship between people living with HIV and healthcare professionals, because medical records can be made publicly available and used as evidence in court. There is no evidence that HIV criminalisation laws deter
Stories in the media increase the notoriety of defendants, further marginalising individuals who are already members of vulnerable groups Justice Worldwide estimates that 68 countries currently have laws that specifically allow for HIV criminalisation; including the 29 individual states in the United States with such laws raises the total to 97 jurisdictions. Other jurisdictions have nonspecific laws that are still used to criminalise people living with HIV. Prosecutions for HIV nondisclosure, exposure, and transmission have been reported in 69 countries — 116 jurisdictions, including 38 US states and the US military. HIV-related cases can be challenging to track — even more so in countries where such information is not freely available. Therefore, it is impossible to determine an exact number of HIV-related criminal cases for every country in the world. Much of what is known about individual cases comes from media reports. Mainstream media plays a significant role in
epidemic and widespread ignorance about the nature of HIV transmission. Their enactment was also driven by stigmatising myths of “intentional HIV transmitters” fed by mainstream media reports that often exploited other forms of bias, such as anti-black racism and homophobia. The number of countries enacting such laws has increased in the decades since, even as powerful HIV drugs became available which dramatically lengthened lifespans for those with access to them, and reduced to zero the risk of HIV transmission from those taking them. Sub-Saharan Africa had no HIV-specific laws when the 21st century began; now nearly half the countries on the continent have a mechanism for prosecuting people living with HIV. This trend has also been presenting in high-income countries in recent years.
partners who used HIV criminal laws as a tool of harassment or control, often after the woman attempted to end the relationship. Because women may be more likely than men to engage with sexual and reproductive healthcare due to pregnancy, women are often the first person in a relationship to be tested for HIV and to know their HIV-positive status. Even just an allegation of being the one to “[bring] HIV into the home” or simply an accusation of non-disclosure that leads to an encounter with the criminal system, can result in a woman losing her housing, property, child custody, and more, creating negative repercussions for her entire family. Most laws require only that a person knew their HIV status for a successful prosecution. This effectively punishes a person living with HIV for the healthseeking action of knowing their HIV status, and can result in a
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behaviour that can transmit HIV, or reduce the number of new HIV cases. Further, by making it illegal for a person with HIV to have sex without disclosing their status, HIV criminalisation delivers the inaccurate message that all people with HIV are inherently dangerous, and that an adequate prevention strategy is to rely on partners to disclose and avoid those who share the information that they are living with HIV. In reality, a large proportion of new HIV cases result from unprotected sex with a person who is living with HIV, but has not become aware of their HIV status through testing — or has had barriers to staying connected to HIV care. In a true public health approach, all consenting partners must take responsibility to engage in safer sex. This is an extract from Making Media Work for HIV Justice. read in full here
explaining the effect HIV has on particular parts of the body
Dem bones, dem bones Where would we be without our bones? Just a sack of skin puddled on the floor, that’s what. So it’s important to look after them — especially if you’re living with HIV. Studies suggest people with HIV have significantly lower bone mineral density (BMD) than their negative peers. But having some knowledge of the causes of decreased BMD — plus an idea of some of the steps you can take to minimise damage — can help you maintain healthy bones. First up, Bones 101. Bone is living tissue that — much like the kidneys —has remarkable regenerative qualities. The two key components of bone are collagen and mineral. Collagen allows our bones their malleability, while the mineral elements harden the collagen so that the bones are strong and able to withstand physical stress. Peak bone mass is reached at around the age of 30; after that, our bone density is on the decline.
Low BMD is of particular concern as it can lead to osteoporosis — the most common bone condition in Australia. There are two types of osteoporosis: primary — one that occurs in both men and women at any age (but usually follows menopause in women and presents later in life in men); and secondary — occurring in people who take medications and/or have a disease that can cause decreased bone density (such as HIV and some of the drugs to treat it). Dubbed the “silent disease”, osteoporosis is rarely accompanied by any symptoms. Indeed, many people are unaware they have the condition until they suffer a bone fracture. While the greatest risk of fracture occurs in the wrist, hip or spine, any bone in the body is more likely to fracture in someone who has osteoporosis. BMD tests (a DXA scan) are the only way to detect osteoporosis. Scans are advised for all HIV-positive menopausal women, and for HIV-positive men aged 50 years or older. The risk of
developing low BMD and osteoporosis increases with the length of time someone has been living with HIV. As age is a major factor of developing osteoporosis, older people living with HIV are particularly at risk of developing the condition. As well as osteoporosis, there are a number of other bone disorders associated with HIV including osteomalacia (softening of the bones), osteopenia (a weakening of the bones) and osteonecrosis (death of blood tissue due to reduced blood supply). There are two categories of risk factors for low BMD: controllable and uncontrollable. Those factors out of your control include the ageing process, gender, being menopausal, being thin or small, race, and genetics. Factors within your control include insufficient levels of calcium and vitamin D; low intake of fruit and veg; too much protein, sodium and caffeine; lack of exercise; too much alcohol; and smoking. As mentioned, also in play for a positive person are some antiretroviral treatments. Tenofovir-based anti-HIV drugs,
and some protease inhibitors, have long been associated with bone loss, for example, though why is not fully understood. Then there is the HIV itself. Studies comparing the incidence rates of fractures among people with HIV and their negative peers have found fracture rates to be significantly higher among the positive population. The reasons for this are not entirely clear, although there are a number of theories as to why: HIV can increase certain proteins in the body that have been found to accelerate bone loss; it’s thought that a positive person’s heightened T-cell activity may have an adverse effect on the bones; some researchers have also speculated that HIV’s ability to infect cells in the bone marrow may be to blame for bone loss. Another HIV-related risk factor is hepatitis C coinfection. Observational studies have found that hep C is a very strong additional risk factor for fractures in people living with HIV. So how best to minimise the risk of developing low BMD? Controlling body weight, quitting
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smoking and moderating alcohol consumption, are all important steps to take for people at high risk of low BMD. As is soaking up the sunshine. Regular bone screenings for HIV-positive people aged 50-plus is also recommended. And both weightbearing exercises and resistance exercises are helpful in maintaining and increasing bone density and strength. (Weightbearing exercises include any activity that forces your muscles and bones to work against gravity such as running, jogging, walking, and stair climbing; while resistant exercises include weight lifting.) And finally, rich sources of calcium (cheese, yogurt, seafood, dried fruit, leafy greens and tofu), vitamin D (fatty fish, orange juice, soy milk, cheese and egg yolks) and phosphorus (poultry, fish, nuts, beans and dairy products) are all dietary steps you can take to ensure dem bones stay strong and healthy for longer. For more tips head to Healthy bones australia
IN MARCH, AUSTRALIA AND THE WORLD LOST ONE OF THE LEADING FIGURES IN THE FIGHT AGAINST HIV/AIDS. CHRISTOPHER KELLY PAYS TRIBUTE TO PROFESSOR DAVID COOPER.
THE PEOPLE’S CHAMPION P
rofessor david cooper was a young immunologist working in america when he first became aware of HiV/aids. While working at the Dana Farber Cancer Institute in Boston, blood samples arrived from very ill, young gay men in New York. Professor Cooper was due to return to Sydney to take up a specialist’s position at St Vincent’s Hospital in Sydney. With the hospital located close to the hub of the city’s gay ghetto, Professor Cooper was sure that similar cases would soon show up there. Which they did, giving Professor Cooper the grim distinction of diagnosing some of the first cases of HIV in Australia. More cases inevitably followed and beds on Ward 17 South (the AIDS unit) at St Vincent’s began filling up fast. Tina Kelleher was a nurse on the ward. “There was death: confronting, often painful, sometimes lonely. In the early days people would come in and die within a matter of hours, some in Emergency while waiting for a bed.” At this time, very little was known about HIV/AIDS. In order to find answers, Professor Cooper and his colleagues visited medical practices in Oxford Street to enrol young gay men in a study. The results led Professor Cooper to present a seminal paper in The Lancet — the first-ever of its kind
to describe in detail the so-called “seroconversion illness”. Very soon after the first cases of HIV/AIDS were diagnosed in Australia, activists from the gay community began communicating with one another. Networks were formed to share what little information there was about the cause of a deadly disease primarily affecting gay men. Professor Cooper was always willing to engage with the community and share what he knew. “Throughout the years, he spent time in dialogue with community leaders and activists — many often his own patients,” said former executive director of the National Association of People with HIV Australia, Jo Watson. “He would furiously debate the issues when we were pushing for things to be better, faster, or when we were demanding more attention on an emerging issue. He would relish the engagement and was determined to find collaboration and partnership, even when there was frustration and tension over intersections of science, policy and activism.” By now, funerals of those who died of AIDS were practically a daily occurrence, and the gay community became increasingly angry at the delays in drug development. Recognising that the situation was desperate, Professor Cooper used his
scientific and political clout to ensure that the bureaucratic system was overhauled and that treatment was fast-tracked to those in need. “He saw himself as a grounded advocate from the beginning,” said Watson. Professor Cooper proceeded to take a leading role in international clinical drug trials, research that would ultimately lead to the development of combination therapy and the treatment breakthrough that many had long hoped for. Almost immediately the dying slowed and, over time, wards such as 17 South began to empty. “Since the late 1990s, the beds had been increasingly reallocated for other illnesses,” said Kelleher. The AIDS unit at St Vincent’s closed for good in 2007. Professor Cooper’s role in the turnaround was pivotal. “David’s research made a significant contribution to curbing the spread of HIV/AIDS. His work saved so many lives,” said Professor Tony Cunningham, President of the Association of Australian Medical Research Institutes. Yet Professor Cooper’s work was far from done. Attention was turned to helping countries less fortunate than Australia. When it came to providing life-saving drugs, Professor Cooper was adamant that no one would be left behind — no matter where
they lived. Helping those most vulnerable was at the core of his life’s work. In his role as president of the International AIDS Society, Professor Cooper made it his mission to make a difference — the unifying theme was always that people should have access to the best available options for treatment and prevention, regardless of their social or personal circumstances. During his illustrious career, Professor Cooper received many professional accolades, including the Order of Australia in 2003. Despite being internationally lauded as a leading HIV clinician, Professor Cooper continued to consult as a physician. “He was renowned for his compassion with each of his patients,” said Executive Director of the International AIDS Society, Owen Ryan. “That perfectly encapsulates the genuine heartfelt nature of who David was and how he approached his work. We are forever indebted to him for his vision, tenacity and humanity.” Such examples of Professor Cooper’s humanity best sum up the measure of the man. “His personal devotion to the people most affected by the virus was extraordinary,” said Craig Cooper, CEO of Positive Life NSW. “Patients were his focus,” said Watson. “They gave him much inspiration over the years —
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and much humility. For that, we loved him.” Bill Paterson worked with Professor Cooper in Ward 17 South during the horror years of the mid-1980s. “He was always ‘David’,” said Paterson. “No matter who you were. Whenever anybody spoke of ‘David’, everybody knew who you meant.” When the death of Professor Cooper was announced on Monday 19 March, there followed a torrent of tributes. “A giant”, “an influential figure”, “an internationally renowned leader”, “a true warrior” — and so on. There is no doubt that Professor Cooper was indeed a “giant” in the field of HIV/AIDS research, but perhaps the most moving accolade came from Paterson who spoke about a Swedish drama that documents the fear and ignorance that surrounded AIDS back in the day. Paterson described one particular scene that depicts two nurses dressed in heavy-duty, bio-protective clothing caring for a man dying of AIDS. When one nurse wipes a tear from his eye, the second nurse rebukes her by saying, “Don’t ever wipe tears without gloves.” “David,” explained Paterson, “wiped tears without gloves.”
l There will be a memorial service for Professor Cooper at Sydney Town Hall on Thursday 14 June from 12.30–2pm.
POSITIVE LIFE SAYS
If in doubt, opt out! unless you choose to opt out, by the end of 2018 you will have a My Health record (MHr) account automatically created for you by the australian digital Health agency (adHa). The mHr scheme is an online database of summary information which is uploaded by you or your healthcare providers, which could include your prescriptions, medical conditions, specialists’ referral letters, hospital discharge summaries, test results and x-ray reports, as well as medicare (PBS and mBS) records from the previous two years. This information will be accessed by your GP, specialists and hospital staff and can include your pharmacists, participating pathology labs or diagnostic imaging providers, or someone authorised to represent you, unless you opt-out. This is what is known as primary use of your mHr. Positive life has concerns about the primary and secondary uses of mHr for PlHIV and believes this could undermine the benefits of mHr. Examples of secondary purposes include: linking your health data across systems and passing information to law enforcement authorities; accessing your health data in the preparation of legal proceedings before any court or tribunal; and
Positive life believes the ownership and confidentiality of health data must remain under our full control as PlHIV. In 2018, there will be a threemonth opportunity to opt out of the mHr. The opt-out period will run from 16 July to 15 October 2018, and if you share any of these concerns, Positive life is suggesting PlHIV opt out of mHr until your concerns are allayed.
We need to be fully aware who has access to our health data, when they can access it, what it’s being used for and the potential implications. benign or active surveillance of individuals or populations, with or without the consent of the individual record holder. Positive life has serious concerns about stigma, privacy and potential criminalisation of PlHIV with the secondary use of mHr. These impacts can pose significant risk of prosecution to PlHIV who are sex workers; who
use drugs (licit and illicit); who are sexually active and nonmonogamous, polyamorous and single and not practicingreasonable precautions; immigrants and refugees living with HIV; those with a criminal history or involved with the criminal justice system; and women living with HIV. For these PlHIV, personal and sensitive
health data could become available for secondary use at any stage. Confidentiality impacts all of us living with HIV differently. We need to be able to trust the Commonwealth Government and be fully aware who has access to our health data, when they can access it, what it’s being used for and the potential implications.
l You can subscribe to an email service on the my Health record website, which will notify you when the opt-out period starts. l By June 2018, Positive life will provide a step-by-step resource on how to opt-out. l For people in the Nepean-Blue mountains area who already have a mHr and cannot opt out, Positive life will be offering step-by-step resource on how you can cancel, restrict or modify your record. l For people living with HANd or limited access to a computer, Positive life can assist you to opt out. l For further information or support about what this means for you, please contact Positive life on (02) 9206 2177 or click here.
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PositiveLifeNSW 414 Elizabeth Street Surry Hills 2010 | ) (02) 9206 2177 or 1800 245 677 | w positivelife.org.au positiveliving l 12 l WINTEr 2018
THE POWER OF PEER SUPPORT The Peer Navigator project that places HIV-positive peer workers in high caseload Melbourne clinics is almost underway, with the workers due to begin work in late May. the new peer navigators, aashvin and sarah, will join the peer support team and provide one-on-one support to newly diagnosed people living with HiV (plHiV). The team encompasses the personal experience of living with HIV through various lenses that cross gender, sexuality and ethnicity. Peer Support manager Sara Graham is confident that expanding this area of service delivery is vital to the Victorian HIV response. “Having access to someone who has the lived experience at such a crucial time in his or her HIV journey is invaluable,” said Graham. “This type of support has been proven to improve people’s knowledge, skills and confidence to manage
same afflictions you have survived. sarah: The opportunity to work at a grassroots level and really implement the meaningful Involvement of People living with HIV (mIPA) principles. For this role to be viewed as vital in the care of people newly diagnosed, and people having issues with their diagnosis, speaks volumes to how far we have come — truly nothing for us without us! What do you hope the HiV response will look like in two years? aashvin: I hope to see better involvement of people affected by HIV in the community and that those people realise their ability to drive change in fighting stigma, social isolation and all that comes with living with HIV.
Peer Navigators Sarah and Aashvin their wellbeing and overall quality of life. These roles will also address the challenges around retaining people living with HIV in care and ensuring that they connect to various support services.” Clinics participating in this project include melbourne Sexual
Health Centre, Northside Clinic, Prahran market Clinic, Alfred Health, and monash Health. PlHIV who wish to access this service can get a referral from one of the clinics or contact living Positive Victoria direct. Aashvin and Sarah took some time to talk about what being a
Peer Navigator means to them. What excites you most about this role? aashvin: Helping others recognise their own resilience when facing adversity, especially when they have gone through the
sarah: I hope PlHIV will really take control of their health and wellbeing and feel free enough from stigma to do so. I know firsthand the power of peer support and I hope the HIV response will look more as it did 30 years ago — a group of highly engaged community members driving the response.
I hope PLHIV will really take control of their health and wellbeing and feel free enough from stigma to do so. I hope the HIV response will look more as it did 30 years ago — a group of highly engaged community members driving the response. SARAH
living positive victoria | Suite 1, 111 Coventry Street Southbank 3006 | )03 9863 8733 | w livingpositivevictoria.org.au
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NORMALISING With U=U and PrEP, why let being HIV-different get in the way of a good relationship? Here, three people discuss sex and intimacy as they face a brave new world full of desire, pleasure and acceptance.
SURESH While Suresh has changed countries, partners and attitudes, being HIV-different hasn’t changed his chances for love and companionship. It was during a routine STI check-up in 2007 that Suresh found out he had HIV. “But I didn't start treatment until a year later,” he says. As an overseas student, Suresh’s visa did not qualify him for PBSsubsidised antiretrovirals. His private health insurance wouldn’t cover them either. Fortunately, he had a nurse who became his fairy godmother. “She used to provide me with the leftovers that other patients hadn’t used because they’d had an adverse reaction or something,” he says. A year later, Suresh started importing generics from India because he didn’t think it was fair to rely on his nurse to have to source his supply. meanwhile, things at home with his brother weren’t going well. “He was being homophobic and bullying,” he says. “I couldn’t focus on my studies. my university work suffered and I almost got terminated. Plus my parents said that I was jeopardising their plans to migrate to Australia,” he sighs. “It was a tough time.”
Changing partners Then Suresh met rod through an online dating site for positive people. “After two weeks of talking, he moved from Sydney to be with me,” Suresh says. “And we found a place together. rod had been living with HIV for about 20 years and he helped toughen me up.” With rod’s help, Suresh completed his degree, stood up against his parents and brought legal action against his brother to stop his ongoing bullying. In 2012 they packed up and moved to Sydney. With rod’s sponsorship, Suresh applied for permanent residency, which was initially rejected but finally approved the following year. “Our relationship ended in 2014. But we’re still really good friends,” he says. “And then I met Cameron.” Cameron was going through a low point in his life. He had just separated from his wife of 30 years. He also had
seven children. He was very new to the gay scene. He didn’t know much about HIV and even less about its transmission. “He basically had nowhere to go and I thought . . . stuff it . . . let’s get together. So he’s been living with me ever since.” Suresh told Cameron he was positive within 72 hours of them meeting. “He was a bit taken aback and he did have a bit of a cry. But he stayed. He didn’t write me off because of my status.”
Mixed messages In the weeks that followed, Cameron agreed to accompany Suresh to an appointment with his HIV specialist. The first session with his doctor went well. “He told us that so long as I stick to my meds and we are in a monogamous relationship, we’ll be fine,” says Suresh. Then Cameron went to get tested himself and saw a nurse who told him: “You’re dating a positive person. You need to wear condoms every time.” Suresh was incensed. mixed messages were the last
extracts republished with permission from positive life nsW. originally published in HiV difference (sero disco 3) © 2017
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thing they needed. So, they had another meeting with Suresh’s doctor who became a bit cautious himself. “He focused on the .001 percent possibility,” says Suresh. “I didn’t know what was going on.” Suresh and Cameron argued. They then decided to do their own research. That’s when they read about the Treatment as Prevention studies that showed zero percent transmission between HIVdifferent couples. And they started having sex without condoms. “For someone who knew nothing about HIV,” says Suresh. “Cameron has taken it all very well. He may be 53 but because he’s just come out, he’s like a raving 19-year-old who wants to bonk every night,” he laughs.
TED While Ted navigates the boundaries of labels, sex and identity, being sexually adventurous with his HIVdifferent partners and fuck buddies doesn’t slow him down in any way. Ted grew up with an identical twin sister — or “womb mate” as he likes to call her. “I came out as a lesbian to a group of
POSITIVE VOICES POSITIVE PEOPLE SHARE THEIR EXPERIENCES OF LIVING WITH HIV
DIFFERENCE friends when I was 14,” he says, “but that didn’t go too well, so I put myself back in the closet until I was 17. I then came out to my parents and sister and my grade at school. It was the late nineties and I was pretty stoked to be a hard-core dyke from a Catholic girls’ school in Western Sydney. my sense of being male didn’t come until much later,” he says. Ted was 30 when he started talking openly about his trans experience, and 31 when he started medically transitioning — taking hormones and undergoing chest surgery. “I always identified more queer than lesbian,” he says, “and had a queer attraction to men even though I was disguised as a woman; it was a bit of a head fuck because I didn’t have a language to describe what was going on.” So, as he started to affirm his male gender and became more comfortable in his skin, he found himself attracted to and, in turn, attracting men. Today, at 37, Ted sees himself as a queer man who is pretty gay.
Evolving identity Ted lives with a female partner and only has sex outside of the relationship with men. He and his girlfriend met before his transition and spent a year negotiating his newly found sexuality. “Our relationship has evolved,” he says, “to where we celebrate each other’s sexual adventures. She’s the best and I feel very lucky to have found such a rad life partner.” In 2014, Ted co-founded PASH.tm, a project seeking to address the sexualhealth needs of trans men — particularly
around HIV — and consequently found he was mixing more with HIV-positive gay men. “I felt a real kinship,” he says. “I could relate to the kind of stigma they were talking about.” He also found that positive guys were often more accepting of his own body diversity. "They were either like 'I don't care' or 'fucking hot!'" He finds many of the positive guys he hooks up with are also sexually adventurous and he has a stable of regular fuck buddies, roughly half of whom are positive. He met many of his partners online, where his profile is clear about him being trans and also that he is on PrEP. Ted recalls the chat that went on before one particular hookup: “He told me he was poz. And I could imagine those times when people have gone ‘no thanks’, like the times I have told them that I’m trans. And I said to him: ‘I don’t care. What time am I coming over?’ We had a great time.”
Pre- and post-PrEP Ted was having a lot less sex before PrEP came along. “Testosterone sometimes changes the lining of your front hole,” he says. “So, while I wanted to use condoms, they were actually quite painful. Being on PrEP has been a sexual liberation for me. I now feel much more comfortable and less anxious having the type of sex I want. I don’t know what it’s about, but the likeminded guys I meet just happen to be positive. Along with other trans guys, they are the men I feel warmest towards. Perhaps it’s because we have all gone through fire to get to where we are.”
AARON Today Aaron takes each day as it comes, and feels much more comfortable talking about HIV with all his partners — HIVpositive or negative. His straightforward approach in a changing world is to ‘get it out of the way’ and get on with life. All Aaron remembers of Catholic school life in Brisbane was the bullying. “It was horrid,” he says, before quickly moving on to describe the freedom he felt as a 16year-old getting out into the world. “I found myself in some very masculine workplaces,” he smiles, “first in the building industry, then football, then racing.” He smiles too when he talks about his first relationship. “He was wonderful,” he recalls. “He played around and had an alcohol problem . . . but he was still the best partner I ever had.” That first relationship lasted two and a half years before Aaron found himself single and out on the scene. Aaron had little trouble attracting attention in his early twenties. “I had them falling at my feet left, right and centre,” he sighs. “men running up the road after me.” He then entered a relationship, which he describes as “a bit of a disaster, really” and attributes financial commitments to why it lasted for the five years it did. It was now 2007 and Aaron describes himself as being ‘a bit of a lost soul’. “I was over life,” he says. Having just got out of one abusive relationship, he promptly
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found himself in another. “But this one was bad,” he says, “very bad.” luckily, this time the physical violence only happened once before he got out. depressed and anxious, Aaron found himself partying a lot more than usual. He was drinking to dull out the pain. And having lots of sex. That year was also the year he seroconverted. “I took it really bad,” he says.
Undetectable preferred There have been a number of HIVdifferent boyfriends in the last nine years. Some — where he has disclosed and they simply haven’t cared — make good news stories. Others less so. One friend reacted particularly badly and “ran around telling everyone”, says Aaron. This friend’s mother even confronted Aaron’s new boyfriend, saying he shouldn’t have sex with him because he’d get infected. “He told her that we’d been going at it like rabbits,” laughs Aaron. “He didn’t care.” Other friends came to his defence as well. Aaron believes this experience did him a favour. He has no problem disclosing now. He is straight forward about it. Bang. Get it out of the way. “And most often neg guys are more than fine about it,” he says. Some have said that having condomless sex with someone who claims to be undetectable for at least six months is a safer option than with someone who claims to be negative. “One even responded with ‘Fucken cool. We can bareback all day’,” he laughs. Aaron feels more inclined to talk about HIV these days. He likes to educate where he can. “I’m living really well with it. I’m accepting of it,” he says.
THE INFLUENCERS SARAHFEAGAN FOR FOR HOW HOW TOTO BECOME BECOME ANAN HIV HIV WARRIOR WARRIOR 1 Get educated. Knowing about the virus and treatment can not only help you make better decisions about your own wellbeing, it also empowers you to help others. 2 Get political. Speaking out against injustices is important, and joining a network of people living with HIV is an effective way to do so. Such groups can help focus your HIV advocacy and link you to warriors in your community. 3 Know your rights. To self-advocate, know your rights so you can take action against those who discriminate. 4 Reach out. Volunteer at your local HIV org. You can connect in many different ways, such as through community outreach or offering peer support. 5 Speak up. Speaking out about HIV with your family, friends and others helps put a face to the epidemic and educate your loved ones about the reality of living with HIV in 2018. 6 Disclose. Sharing your HIV status isn’t always easy, but doing so helps to normalise disclosure — which in turn fights stigma.
When Sarah Feagan got sick more than ten years ago, the emergency physicians didn't think of HIV as a possible cause and it took some time before she was tested and diagnosed as HIV-positive. “I reacted to it badly, feeling I was a social pariah, unlovable and could only see the rejection and hate that can be directed at people with HIV,” says Sarah. “I stopped taking my antiretrovirals and ended up in hospital critically ill. It was only because my friends from Positive Women and my family showed me so much love and support that I decided I wanted to live, went back on the ARVs and got better.” A board member for the National Association of People with HIV Australia and a Peer Navigator for Living Positive Victoria, Sarah is an influential voice in the Australian HIV community. Sarah's major passion in her HIV sector work is in trying to improve the chances of early HIV diagnosis, and helping people with HIV to come to terms with their positive status. Sarah is also keen to encourage young positive women to take up leadership positions in the sector. “I’m very grateful that our older activists have made life better for us, but there needs to be a younger generation to replace them as they get older. We need a strong community to ensure that stigma is tackled and that an HIV diagnosis is not a cause for huge fear and anxiety.”
Kombucha may be all the rage at the moment, but the tea-based beverage actually dates back to China more than 2,200 years ago. Green or black tea is most commonly used; added to that is sugar that has been fermented with a symbiotic culture made up of vinegar, bacteria and yeast. Due to the fermentation process involved in creating kombucha, it contains a large number of healthy bacteria known as probiotics. These bacteria line your digestive tract and support your immune system, as they absorb nutrients and fight infection and illness. Drinking kombucha every day can help you to maintain peak immune health, which trickles down into an impressive number of benefits for your overall health, from detoxifying the blood to reducing cholesterol levels, protecting against diabetes, and even counteracting ageing. Kombucha’s biggest claim to fame, however, is — much like natural yogurt — it is exceedingly good for the gut.
QUOTE/UNQUOTE I have been HIV-positive for several years . . . an ex-boyfriend is threatening to go public with this private information and I will not give anyone the right to frighten me or affect my life. Austrian drag performer and Eurovision winner Conchita Wurst positiveliving l 16 l WINTEr 2018
Published by NAPWHA, Positive Living is a digital magazine for people living with and affected by HIV.