positiveliving FOR PEOPLE LIVING WITH AND AFFECTED BY HIV | WINTER 2019
Don’t mention the c-worD! positiveliving l 1 l WINTER 2019
V O I C E S P O S I T I V E
FORGOTTEN FROM PrEP TO POZ: THE STEVE GENERATION? THE
SPENCER STORY 15 INSTAGRAM MEMORIES 14
Modern advancements such as U=U have redefined what it means to live with HIV. But for the long-term survivors the lived reality is not so rosy.
8-9
What’s your problem? LIPO BELLY • ITCHY SORES
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THE INFLUENCERS NEIL McKELLAR-STEWART 16 4 TAKEAWAYS ALEGACYOF SUCCESS TO REDUCE 30 YEARS AFTER THE FIRST FROM CROI DIABETES NATIONAL AIDS STRATEGY TIPS SEATTLE 6 16 10 IN FILM: TRENDING NOW
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THE EARLY DAYS OF HIV 11
positiveliving ISSN 1033-1788 EDITOR Christopher Kelly
David Menadue Vicky Fisher CONTRIBUTORS David Artavia, Ross Duffin, Jake Kendall, David Menadue, Louise Owen, Steve Spencer, Warren Talbot DESIGN Stevie Bee Design
ASSOCIATE EDITOR PROOFREADER
JACKFRUIT16
If you wish to be added to the PL database to be notified of the next issue, please email admin@napwha.org.au or call 1800 259 666. Contributions are welcome. In some cases, payment may be available for material we use. Contact the Editor EMAIL: admin@napwha.org.au all correspondence to: Positive Living PO Box 917 Newtown NSW 2042 TEL: (02) 8568 0300 FREECALL: 1800 259 666 WEB: napwha.org.au Positive Living is published by the National Association of People with HIV Australia and distributed with assistance from Gilead and ViiV Healthcare. subscriptions
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thenews
Self-test kits now available new self-testing kits that allow people to screen for HiV in their own homes are now available to purchase for the first time in australia. the atomo HiV self-test was approved for sale in november last year and, so far, is the only device that has been given the green light to market. It is important that people only buy selftest kits approved for sale, say experts, so that users can be sure the device is safe and accurate. In laboratory testing, the Atomo device has been shown to correctly identify 99.6 percent of HIV-negative and HIV-positive samples. The AIDS Council of NSW (ACON) welcomed the addition of more testing options
Giving people the autonomy to test themselves in settings they feel comfortable in is an important step toward the broader goal of eliminating HIV transmission. for Australians. “HIV testing is key to ending HIV . . . because if people don’t know their HIV status, they can’t improve their health or take action to prevent potential transmission,” said ACON CEO, Nicholas Parkhill. It is hoped that self-testing will help overcome key barriers that prevent people from screening for HIV. These include a fear of a positive result in the presence of a healthcare provider, privacy concerns, or lack of access to sexual health services. “Providing more options for people to take control of their health is critical to ensuring more people regularly test for HIV,” said Parkhill. “Giving people the autonomy to test themselves in settings they feel comfortable in is an important step forward for the community and the broader goal of eliminating HIV transmission.”
HiV sector receives big funding boost HiV organisations and advocacy groups welcomed the 2019 federal budget, which contained a $45 million commitment towards HiV and sti prevention. The largest HIV funding commitment in more than two decades, investment will be particularly targeted towards marginalised populations such as Indigenous communities and Asian gay men born overseas — populations in which HIV rates are rising (see page 5). In response to the news, Michelle Tobin, convenor of the Positive Aboriginal and Torres Strait Islander Network, said: “We welcome this announcement and hope this money will be able to help reverse the recent trend of increasing rates of blood-borne viruses (BBVs) and STIs in our communities. Our hope is that some of this money will be directed to Aboriginal and Torres Strait Islander peer-based services that are best placed to understand the needs of our people.” Further allocation of funding includes $10 million for a national HIV/STI
awareness campaign and $5 million to allow Australia’s national peak HIV organisations to implement the government’s recently released national BBV/STI strategies. “This investment will add support to our efforts to fund evidence-based programs that strive to improve the quality of life outcomes for people with HIV and further support equitable access to healthcare and treatment,” said Aaron Cogle, executive director of the National Association of People with HIV Australia (NAPWHA). NAPWHA also welcomed a budgetary announcement of an increase of $7 billion towards the funding of aged care. “This will be of relevance to continuity of care for many people with HIV who aim to maintain their independence as they age, or who will access aged-care services,” said Cogle. (See page 8.)
Meanwhile, from July 1, Australians will be able to claim a higher rebate when they visit their GP. As part of a $1.1 billion primary healthcare plan, the government announced a budgetary
Our hope is that some of this money will be directed to Aboriginal and Torres Strait Islander peer-based services that are best placed to understand the needs of our people. MICHELLE TOBIN
commitment to match Labor’s election pledge to end a freeze on the Medicare rebate for GP visits. Out-of-pocket costs have risen in recent years as GPs’ fees have increased while rebates have remained stagnant.
What is on-demand prep? Following the seroconversion of prep advocate steve spencer last december, HiV organisations have highlighted australia’s prep guidelines. spencer is the second australian to receive an HiV diagnosis while taking prep (see page 15). In response to the news — which made headlines around the world — the Australian Society for HIV, Viral Hepatitis and Sexual Health Medicine (ASHM) and Thorne Harbour Health (THH) released resources, including a video, to explain how PrEP on-demand works. “There is a body of evidence to support the use of ondemand PrEP, and it is estimated that tens of thousands of people around the world are choosing to take PrEP ondemand rather than daily,” said ASHM clinical advisor Darren Russell. There are many advantages to ondemand dosing: taking PrEP only around the time of sexual events allows for fewer tablets to be taken overall, resulting in less exposure to medication, potentially
fewer side-effects, and lower costs. With Spencer’s case questioning the efficacy of the strategy, ASHM CEO Alexis Apostolellis said it’s important that clinicians understand that Australia’s guidelines are evidence-based. “All clinical guidelines produced by ASHM go through a rigorous development and review process, with input from some of the world’s top researchers and clinicians. Clinicians need to understand the latest evidence to keep up with how an HIV-prevention method like PrEP is actually being used in the community, and our guidance on PrEP represents best-practice in evidence-
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based clinical guidelines.” Meanwhile, THH has released an explainer video in an effort to educate gay men about ondemand PrEP. “It’s incredibly important that people understand how ondemand PrEP works before deciding to use this HIV-prevention strategy,” said THH CEO Simon Ruth. “We’re at a point in the epidemic where we’re starting to realise the full potential of biomedical prevention. PrEP, alongside undetectable viral load through effective treatment, is leading the way as the most effective strategy at stopping the onward transmission of HIV.”
thenews
Flu outbreak hits hard experts are baffled over an unprecedented start to the flu season, with numbers showing three times as many people diagnosed with the virus already this year, compared to the same period in previous years. In March, more than 10,000 people were diagnosed with the flu; in March 2018, that number was 3,173. By the end of April this year, Australia was nearly halfway to its 2018 overall annual total, with more than 27,000 people struck down by flu — 10,000 in
NSW alone. Describing the outbreak as a “new phenomenon”, NSW Health communicable diseases expert Vicky Sheppard said, “We don’t know if this activity will decrease and then the influenza season will come later in the year or potentially this activity could be ongoing. We’ve had an unusual start.” Australia’s flu season usually runs from June to September, and
peaks in August. Experts recommend that people get a vaccine as soon as possible before
influenza rates increase. “We can stop transmission if people get vaccinated,” said Professor Robert Booy, chief of the Immunisation Coalition. “Otherwise, the numbers could rise even more.” Many Australians — including people with HIV — can get vaccinated against the flu for free through the national immunisation program. And for the first time, all Aboriginal and Torres Strait Islander people aged six months or older will be eligible for a free flu vaccination.
Healthcare providers have an obligation to their HiV-positive patients to inform them of the benefits of u=u. That’s the view of a comment piece published in The Lancet HIV. “Providers caring for patients with HIV should universally inform their patients about U=U as part of their routine care,” write Dr Sarah Calabrese of George Washington University and Professor Ken Mayer of the Harvard Medical School and Fenway Institute. “Conveying benefits and risks surrounding any treatment is fundamental to
patients’ decision making, and this HIV treatment benefit should be no exception.” The evidence supporting U=U is indisputable, with the World Health Organisation and more than 750 organisations around the globe agreeing that people with HIV whose viral load is undetectable through effective treatment cannot sexually transmit the virus. Despite this, recent research suggests that a consequential proportion of healthcare providers are not passing the science on to their patients.
Reasons include disbelief, a perception that U=U would undermine personal responsibility, and concerns about patients’ behaviour and understanding. However, informing patients about U=U has numerous individual and public health benefits, say the authors. The information would encourage patients to start and adhere to antiretroviral therapy, and promote engagement in the treatment cascade; it would free individuals from the fear of intimate sexual relationships and lift the anxiety
about the possibility of transmission; it would also help to reduce internalised stigma as well as accelerate reforms in the criminalisation of HIV exposure and non-disclosure. “With evidence supporting U=U now overwhelming, providers should be routinely communicating the message to all of their patients living with HIV,” the authors say. “For the U=U message to be withheld from any person living with HIV is inexcusable — particularly in settings where treatment is accessible.”
Dating apps linked to STI rise Doctors urged to spread U=U message
sexual health experts have cited dating apps as key contributors to australia’s steady rise in rates of stis over recent years. “We have a very young, mobile population who move quite quickly, and that in itself increases the spread of STIs,” said Dr Kuong Taing from the Sunshine Coast University Hospital. “Another thing is social applications used to contact and access sexual partners.” According to figures from the Kirby Institute, Australia recorded more than 100,775 chlamydia notifications in 2017. Threequarters of these notifications were among 15–29 year-olds. There were also more than 28,000 gonorrhoea notifications and around 4,000 syphilis notifications. And the increase in rates of STIs is not expected to stop anytime soon. However, the impact dating apps are having on the nation’s STI rates isn’t necessarily because people are having more sex, but because they are hooking up with a variety of different people they wouldn’t ordinarily meet. “There really isn’t a suggestion that people are having way more sex than they used to in the past. Certainly not over the past ten years,” said the Kirby’s Dr Denton Callander. “While these apps do help people find partners quite easily, they also help people find partners who are not like them. When you start bridging networks, when you start mixing them, STIs are getting more stirred up and spread.”
new tGd healthcare strategies launched the aids council of nsW (acon) has launched a historic new health strategy aimed at improving the health and wellbeing of the trans and gender diverse (tGd) community in nsW. “We know that compared to the general population, there are significant disparities in the health outcomes of TGD people in many areas,” said ACON’s Atari Metcalf. “And we know that TGD people face barriers when accessing effective and appropriate healthcare.” The key priority areas outlined in the health action blueprint include better access to patientcentred, gender-affirming healthcare, and inclusion for TGD services in the health
system. It also pushes for a more knowledgeable health sector. “With this blueprint, we now have a clear mandate to progress these priority areas,” said Metcalf. Meanwhile, the Victorian government has also pledged to
better support the needs of TGD people, with health minister Jenny Mikakos announcing the opening of two new health clinics in Ballarat and Preston, accompanied by a state-wide training program for health
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professionals. “Our health services must be welcoming, safe and respectful places for everyone,” said Mikakos. “Trans and gender-diverse Victorians deserve equal healthcare.” Ballarat Community Health and Preston’s Your Community Health will provide primary care — including GP services — sexual health, alcohol and other drug services, and counselling aimed specifically at the TGD population. Thorne Harbour Health will lead the delivery of the training program for healthcare staff across the state. The initiative is part of a $3.4 million package to expand Victoria’s health services for TGD people.
thenews While HiV rates among australia’s non-indigenous population have fallen, within the aboriginal and torres strait islander (atsi) population rates have risen. a recent report concludes that effective prep promotion is key to reversing this trend. Between 2013 and 2016, HIV rates within the ATSI population rose by 41 percent — during the same period, the non-Indigenous population recorded a 12 percent decrease in rates of HIV. In 2017, there were 31 HIV notifications within the ATSI population. While that figure is relatively low, rates of HIV within ATSI communities accounted for three percent of Australia’s HIV notifications overall (963). The steady rise in rates of HIV in Aboriginal Australians is an example of the health gap that still exists in Australia. A recent report finds that effective HIV prevention is urgently required to ensure this gap does not widen further, and that Australia meets its goal of “virtually eliminating” HIV transmission by 2022. However, according to the report,
Get the message? such efforts are being hampered by ineffective health promotion of HIVprevention tools, such as PrEP. Indeed, the report — No one’s driving this bus: a qualitative analysis of PrEP health promotion for Aboriginal and Torres Strait Islander gay and bisexual men — cites a lack of education about, and access to, PrEP in remote communities as a key reason for the continued increase in HIV infections within the ATSI population. A major barrier to PrEP uptake among Indigenous men who have sex with men (MSM) is them
simply “not knowing what’s out there now in HIV prevention,” says Dr Bridget Haire, the report’s co-author. “The HIV prevention world has completely changed in the past ten years. Some GPs don’t know about [PrEP] and
people in communities don’t necessarily know about it, or they don’t know to ask.” While AIDS Councils and affiliated sexual health clinics have been instrumental in promoting PrEP to at-risk Aboriginal MSM, many who are not well connected with these services may not have been exposed to prevention messaging. According to Haire’s report, Aboriginal MSM also display “an unwillingness or inability” to connect with mainstream gay communities. This further prevents Aboriginal MSM from accessing gay-focused health promotion and services.
And while health promotion campaigns throughout Australia have emphasised the importance of prevention through the promotion of PrEP, Haire’s report highlights an urgent need for more adequate health messaging for Aboriginal MSM at risk of HIV. Research has found that messages designed, implemented and evaluated by Aboriginal communities are far more likely to improve health outcomes. So what’s to be done to ensure that ATSI MSM get the PrEP message? Aboriginal community and gay community controlled health organisations, says Haire, need to collaborate to deliver effective and culturally appropriate health promotion to ATSI MSM. “We need to see the two sectors working together to get the optimal outcomes for this population. You’ve got to really work with people in the communities to find out what messages work — what language to use, what makes people feel they’re being addressed by the message. When you’re in that waiting room, you’ve got to see health promotion stuff that speaks to you.”
NEWLY-ARRIVED ASIAN GAY AND BISEXUAL MEN
Four times more likely to become positive diagnoses among asian-born gay men in australia have also risen over recent years — and many of these men are diagnosed at a late stage of infection. in response, a range of initiatives exist to help tackle the problem. Dr Nicolas Medland — a sexual health physician and a senior researcher with the Kirby Institute at UNSW Sydney — says that his data shows that newly arrived Asian gay and bisexual men, most of whom as overseas students are not eligible for Medicare, are four times more likely to become HIV-positive in the four years after arriving in Australia. A number of factors come into play here, says Medland. "International students are more likely to have limited English-language skills and HIV knowledge, concerns about stigma and discrimination, a lack of trust in the confidentiality of health services, and bad experiences with healthcare privacy from their home country. This makes this group at high risk of contracting HIV because they don’t have confidence in using our system or because of the potential costs involved.” Dr Benjamin Bavinton, also from the
a range of programs exist for asian gay men, including social groups Kirby Institute, has some stats of his own. “Over the last ten years, the proportion of new HIV diagnoses in gay men born in Asia has increased from nine percent to 23 percent of all new diagnoses nationally,” says Bavinton. “And in the last two years in NSW, more men born overseas have been diagnosed than men born in Australia — and most of these overseas-born men come from Asia. This has become a major concern for those of us working in the sector.” The HIV risk could be greatly reduced if these men could be given a Medicare card,
subsidised PrEP and, if required, HIV antivirals while they are studying here, say experts. Currently, to access HIV treatment without a Medicare card, individuals need to find one of a limited number of public sexual-health clinics who have informal arrangements with private pharmaceutical companies to provide medication. To visit these clinics, Medicare-ineligible patients can often be charged fees and asked to provide contact details (such as parents’ addresses). This can be a disincentive for a person seeking care for HIV. Some students may also worry that finding out they are
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HIV-positive may affect their Australian visa status in the future. Sydney has seen the greatest rise in HIV transmissions in Asian gay men over recent years. To help tackle this trend, AIDS Council of NSW (ACON) has partnered with the Sydney Sexual Health Centre to launch a Chinese test clinic in Surry Hills, a facility staffed by Mandarin-speaking community peers and sexual-health nurses. “Our test facility in Oxford Street sees 58 percent of clients who are born overseas,” says ACON deputy CEO, Karen Price. “We believe it is trusted by these men because of its community setting, the use of peers and the non-judgmental, free and confidential nature of the service.” As well, ACON has initiated an asian Gay Men’s project that delivers community forums and sexual-health workshops specifically for gay men from Asian backgrounds. “Facilitated by community peers, participants at these workshops learn about topics such as HIV, sexual health, testing, staying safe, the gay scene, coming out, and family and relationships in a way that is culturally specific to Asian communities,” says Price.
the conference on retroviruses and opportunistic infections (croi) once again brought together the world’s leading scientists, researchers and advocates — all working towards the common goal of hiV elimination. jake kenDall unpacks four presentations. a paraDigm Shift A monthly injectable two-drug regimen of cabotegravir and rilpivirine is non-inferior to a daily three-drug oral regimen and is overwhelmingly preferred by patients, according to data from two phase-3 trials presented at CROI. Describing the findings as a “big paradigm shift”, HIV researcher, Chole Orkin, who reported the trial results in Seattle, said, “Instead of being reminded that you have HIV 365 days a year, it’s reduced to just 12. That gives people a kind of freedom.” Researchers told CROI delegates that they hoped longacting injectables will help ease one of the biggest challenges faced in the fight against HIV: drug adherence. While antiretroviral treatment has proven to be highly effective at suppressing the virus, there are still many challenges in taking a daily pill, including ongoing stigma.“This long-acting, injectable two-drug regimen may provide an opportunity to break the cycle of a daily pill, which has been a defining characteristic of HIV therapy for several decades,” said Orkin.
tip of the iceberg People living with HIV are 15 percent more likely to suffer sudden cardiac death compared
“The overall evidence for the effectiveness of the intervention is strong,” Hayes said. “Community-based services for universal HIV testing and linkage to care are a key component of combination prevention in the global effort to achieve effective HIV control.”
u=u impactS anD challengeS
Science in
Seattle to people in the general population, according to study data presented at CROI. The study found the risk of sudden cardiac death escalated the longer the virus remained unsuppressed. However, one of the study’s authors, Matthew Freiberg MD, told delegates, “Just because you remain virally suppressed doesn’t mean you never get sudden cardiac death.” It’s well established that people with HIV have a higher risk of cardiovascular complications. For HIV healthcare providers, the study reinforces the importance of continuous monitoring for cardiovascular problems — even among those who have achieved sustained viral suppression. Despite the massive size of this study (144,362 people participated), Freiberg says it’s the tip of the iceberg in terms of our understanding of the link
between HIV and cardiac risk. “People with HIV are experiencing the loss of half of their immune system regularly, and what that means in regards to heart attack, stroke, heart failure, and sudden cardiac death, we don’t really understand,” he said.
community interVention iS effectiVe Community-based service delivery works. That was the findings of the PopART — Population Effects of Antiretroviral Therapy — study, which showed a 30 percent decrease in HIV incidence when community-based approaches were adopted to HIV testing and linkage to care. “Taken together with the
findings of other studies, our results provide key evidence that the universal test and treat strategy can bring down incidence of new HIV infections,” Professor Richard Hayes of the London School of Hygiene and Tropical Medicine told CROI delegates. The largest study of its kind, PopART took place between 2013 and 2018, included 21 urban communities in Zambia and South Africa, and covered a total population of 1 million people. The goal of the study was to see if "enhanced" HIV services led to a reduction in HIV incidence. PopART is an important test of the feasibility of offering testing and treatment on a very large scale, essential for meeting the 90-90-90 targets (90 percent diagnosed, 90 percent of diagnosed people on treatment and 90 percent of those on treatment virally suppressed).
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HIV advocates were enthusiastic to welcome Dr Carrie Foote to CROI. Dr Foote — one of the founders of the U=U campaign — opened her presentation by telling delegates that U=U is far more than a slogan — it’s a human right. “All people living with HIV have a right to accurate information about their social, sexual and reproductive health,” said Dr Foote. While U=U is a gamechanging finding endorsed by international organisations such as UNAIDS, the World Health Organisation and the International AIDS Society, Dr Foote told delegates that this "amazing science" is not as well known as it should be and millions of people with HIV remain ignorant of the implications of U=U and what it means for their lives. While, ideally, everybody with HIV would acquire an undetectable viral load, Dr Foote said it was important not to judge those who don’t. Factors affecting already marginalised communities — such as racism and transphobia — might result in barriers to accessing treatment and therefore impact upon undetectability. Messaging, said Dr Foote, should not isolate anyone living with HIV — even if they have a detectable viral load. “Treatment is a personal decision and not a public health responsibility.” Dr Foote also spoke about the importance of language used around U=U. Although the scientific findings are unequivocal — there is zero risk of passing the virus on with an undetectable viral load — phrases such as “greatly reduces”, “close to zero” or “extremely unlikely”, are still being widely used. It is important, said Dr Foote, to definitively state the U=U message to the wider community in order to dismantle stigma. “Stigma is killing us. HIV stigma is a public health emergency and U=U is an immediate and effective response.”
the big news from croi made for excellent click-baity headlines. but although monumental breakthroughs continue to keep plhiV, researchers, advocates, and allies optimistic about eradicating the virus — as DaViD artaVia reports — let’s not confuse good news with half-truths.
i
n March, it was reported that a man living in london who’d previously been HiV-positive was showing no trace of the virus after more than 18 months off antiretroviral drugs. that this feat — while notable — was subsequently hyped as a possible cure for all just shows how little the general public understands HiV and cure research. The unidentified man received a bone marrow stem-cell transplant from a donor with a rare genetic mutation resistant to HIV called delta32 — a mutation that prevents a protein called CCR5 from rising to the surface of T cells so that HIV can latch onto it. When CCR5 isn’t there to latch onto the virus, HIV is closed off from infecting cells. Scientists believe this genetic mutation has been inherited from ancestors who survived the bubonic plague outbreaks in Europe centuries ago. Perhaps one percent of Caucasians have the mutation, and it is much rarer among Asians and Africans. Delta32 and CCR5 first became the talk of the town in HIV research in 2007 when Timothy Ray Brown (the “Berlin Patient”) was cleared of HIV after receiving stem-cell transplants to treat cancer from a donor with the delta32 mutation. The man in London — now dubbed the “London Patient” — underwent a similar procedure. (News has
timothy ray brown
talk of a cure iS premature since surfaced of a third case, the “Dusseldorf Patient”. He, too, received a stem-cell transplant from a delta32 donor.) During the past 12 years, Brown’s virus has not returned, which makes him the longest functionally HIV-cured person in the world. The London Patient hasn’t taken antiretroviral drugs since September 2017 and is still in remission, which makes him the second patient since Brown to remain virally suppressed for more than a year after stopping treatment. “This is a big deal,” said Prof. Sharon Lewin from Melbourne’s Doherty Institute. “It tells us that Timothy Brown
wasn’t a one-off.” While this is indeed exciting news, let’s not forget some inconvenient facts. For example, as of 2017, an estimated 36.9 million people were living with HIV — and yet Brown is the only single individual who remains free of the virus. There have been other people “cured” before — and, in every case except for Brown’s, their HIV has rebounded, usually within a few years. Eighteen months HIV-free, while remarkable, is simply not proof that the London Patient’s HIV will remain in remission. (And in the case of the Dusseldorf Patient, it’s been only
a matter of months since he came off antiretroviral drugs.) In order to debunk the hype, it’s important to understand the difference between a functional cure and an eradication cure. For doctors to claim an HIV-positive person is “functionally cured”, they need to make certain that levels of HIV are undetectable in the bloodstream. To some extent, this is accomplished today with antiretrovirals. This idea is at the heart of U=U, which has been supported by thousands of doctors, advocates, organisations and governmental agencies worldwide. An ideal functional cure would be for people living with HIV to
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get to a point where daily drugs are no longer needed to keep the virus suppressed. We are getting there, slowly, thanks to multiple vaccines currently being studied and thanks to a number of milestones in the pharmaceutical landscape, leading to long-acting HIV medications (pills and injections) coming to the market in the next few years. But even in the best-case scenarios, HIV researchers admit that functional cures will likely last no more than a decade at a time. And, essentially, a functional cure means that the virus is still in the person’s system, from which it can rebound at any point once treatment is stopped. An eradication cure is altogether different: it would entail the complete elimination of the virus from the body. That means getting rid of every ounce of active (and dormant) HIV from the blood, organs, and reservoirs. And we’re not there yet. To be frank — we’re not even close. Scientists have tried to repeat Brown’s success over the years, but with no luck. In 2012, researchers reported on cases of two HIV-positive men who’d also received stem-cell transplants. While the two men remained in remission after the procedure, their HIV rebounded months later. Numerous cases throughout the years had similar ends. All this being said, optimism is still important — and warranted. HIV is being controlled better than ever, and someone diagnosed with HIV today has nearly the same life expectancy as their HIV-negative peers. There is great progress toward longerlasting treatments and even functional cures. But we shouldn’t confuse that with the fantasy that an eradication cure is just around the corner or could be widely available to the public within a few years. Those things simply are not the case. In regards to the London Patient, it remains unclear what his ultimate contribution to the field of HIV research will be. But, for now, it appears premature to talk of a “cure”. Indeed, Ravindra Gupta, the biologist treating the London Patient, has specifically referred to him as “in remission”, saying, “it’s too early to say he’s cured”. n This is an edited extract of an article originally published in HiV plus.
FORGOTTEN GENERATION?
THE
Modern advancements such as U=U have redefined what it means to live with HIV. But, as ROSS DUFFIN reports, for the long-term survivors the lived reality is not so rosy. positiveliving l 8 l WINTER 2019
n early 1981, while on holiday in San Francisco, I met a very handsome man who was way more sexually adventurous than me. Let’s just say he expanded my horizons. Two weeks later I got really sick. Looking back, I suspect I was seroconverting. When I received a positive test result some years later, an HIV diagnosis was considered a death sentence.
I
Thirty-eight years on, and I am in a place I never expected to be: I am in my sixties, I now live beside HIV — tuning into it when necessary — rather than it being my primary identity, I have a solid set of friends and, generally, life is pretty good. Yet for a lot of people of my generation life is not so good. I recently reconnected with the HIV sector for a period and got to hear from a lot of older people with HIV who, like me, had survived the ’80s and ’90s. Two areas of discussion struck me with meteoric force — the myriad health issues connected to HIV and ageing, and the related issues of financial hardship and social isolation. Let’s tackle the health issues first. People diagnosed HIVpositive prior to 1996, before the arrival of highly active antiretroviral therapy, are experiencing great levels of illness and frailty. As they’ve aged, the long-term survivors have acquired various multimorbidities such as bone disease, kidney disease, liver disease, cardiovascular disease, cognitive impairment, and certain cancers. Indeed, a detailed study — carried out in Denmark over two decades — found HIV-positive people more likely to have severe forms (and to be at much higher risk) of age-related diseases than HIV-negative people. The findings, say the authors, are relatable to other Western countries with maturing populations, such as Australia, where, in 2020, the proportion of
people with HIV over 55 years is expected to reach 44.3 percent. Another study — assessing the incidence of heart attack, kidney disease and non-AIDS cancers among people with HIV — found that, although the rate of these events occurred at similar ages than those without HIV, the likelihood of these three outcomes occurring was significantly higher among older people with HIV than their negative counterparts. Take a friend of mine as an example. He was diagnosed with AIDS in 1991 and acquired four serious opportunistic infections. This meant many months laid up in Melbourne’s St Vincent’s Hospital. He also suffered from severe side effects associated with the early antiviral drugs — including lipodystrophy. As he’s got older he has had to deal with an ever-growing number of comorbidities related to ageing with HIV, including diabetes, problems with his heart, liver and kidneys, and two cancer diagnoses — both of which, fortunately, have been successfully treated. My friend is in his sixties, and his story is not unique. The reality is there are many people of his generation whose health as they get older is dramatically affected by living long-term with HIV. Health concerns are not the only challenges facing the longterm survivors. Many find themselves stuck in poverty. In the early days of the epidemic, it was common for people with HIV to experience career disruption due to illness. And many did not expect to live long enough to contemplate a lengthy retirement — let alone plan for one. It is also increasingly difficult these days for people with HIV to access the Disability Support Pension. As a consequence, a lot of people with HIV end up on Newstart instead, which in turn leads to financial hardship. Poverty is also linked to housing stress for many older people with HIV, with rental stock remaining unaffordable for those on low incomes. Older people with HIV are also more likely to experience social isolation. There are varied reasons for this. Many lost a lot of friends during the horrors of the ’80s and ’90s; social housing is often located in very outer suburbs many kilometres away from support services; and poverty
prevents people from being able to afford much of a social life. Fortunately, support is available — through government services and community organisations. People over 65 (50-plus for Aboriginal and Torres Strait Islander people) can log onto the government’s My Aged Care website and seek an assessment of their aged-care needs, whether it be for care in the home or in an aged-care facility. Medical evaluations from your GP or HIV specialist will be required to back up your case. It is highly recommended that people with HIV seeking this service use an advocate — preferably someone with knowledge of the system — to guide them through the complexities involved. Your local HIV organisation would be able to assist with this. Aged-care providers vary in their understanding and sensitivity to the needs of people with HIV and it would be useful to enquire whether HIV awareness training has been delivered to the provider you wish to use — or whether the provider would consider such training. Some people with HIV will not wish to have their positive status widely known to staff of an agedcare service, but training could still be delivered without details being disclosed. For people with HIV under 65 experiencing age-related issues, community organisations are the best resource for care and support needs. They can liaise with nursing services to visit your home if this level of care is required and some may provide volunteer carers or buddies to help with home-care needs. Peer support groups for older people with HIV also exist to provide practical help and emotional assistance. (See box.) Today, we hear a lot about TasP, PrEP and U=U: these miraculous acronyms have transformed what it’s like to live with HIV. Such advancements would’ve been considered wishful thinking three decades ago. Back then, people with HIV were literally fighting for their lives. Whilst it’s wonderful that the landscape has changed, it’s important to remember that those who survived are still battling today. We must not allow the long-term survivors to become the forgotten generation.
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ENSURING NEEDS ARE MET recently, i took part in an sbs Insight program in which four very articulate HiV-positive people spoke about their experiences living with the virus. it was captivating television, with the host, Jenny brockie, managing to bring out some of the difficult and raw emotions two HiV-positive women, a gay aboriginal man and a gay asian man had been through. i learnt a lot and saw how much more difficult life can be when you are diagnosed in an environment where there aren’t always peers around to support you. i was asked a question about the early days of the epidemic in australia — when there were no treatments and little peer support either — but picked up the sentiment that those days are over and we’ve moved on now. We're now in a world of prep and treatment as prevention, a world in which people with HiV have a brighter future. Which is kind of true, at least for the majority of people living with the virus. For those of us who have aged with HiV over the last 20 or 30-something years, it's not quite as pretty a picture. richard Keane, ceo of living positive Victoria (lpV), recently said to me, “there’s a whole generation of ageing people with HiV out there who we don’t see out socially, who are now quite frail with HiV-related co-morbidities. they're often quite housebound and we need to ensure their support needs are being met.” i was pleased to learn lpV has set up a HiV and ageing peer support group that meets monthly with guest speakers to deliver a range of health promotion tips as well as provide the emotional support that peers can best deliver. as the baby boomer generation of positive people starts to show a greater need of support, other HiV organisations around the country are doing the same. the more intense care and support needs that richard was referring to, though, involve clinical oversight and workers or volunteers to visit people in their homes. so i was delighted to help deliver training to volunteers wanting to work with thorne Harbour Health in Victoria recently. surprising to me was the number of young men and women wanting to help to care for this ageing cohort, along with the thorne Harbour inhome support workers and the bolton clarke nursing staff. in the past when i have done this training, the younger members wanted to work predominantly in health promotion with gay men — itself a very laudable and important thing to do. but it gives me hope to know that there is a significant number of volunteers out there who want to help support older or frail positive people in their homes. it’s great that most people diagnosed with HiV in recent times will probably lead relatively healthy lives; it is also very heartening that there are those out there who haven’t forgotten the generation of survivors who are still having a difficult time dealing with this virus and its aftermath. – david Menadue
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LEGACY OF SUCCESS
Australia’s First National HIV Strategy is 30 years old. As Warren Talbot reports, the story of the Australian response is one of lively community engagement and sound public health policy.
BILL BOWTELL
on the international stage, two outstanding achievements of australia’s healthcare system are commonly recognised: the introduction of Medicare, and our response to the aids crisis — most notably the involvement of those most affected by the epidemic. As Bill Bowtell — an architect of Australia’s response to HIV/ AIDS — explains, that the help of community activists was sought to shape government strategy was an extremely progressive move. “Thirty years ago, the idea that those with, or closest to, HIV/ AIDS might even be consulted, let alone have a determinate and final say in national policymaking, was deeply radical.” Advised by Bowtell, the health minister at the time, Dr Neal Blewett, rejected the advice of his own National AIDS Taskforce, which suggested compulsorily
Dr Neal Blewett and Dr Elizabeth Reid notifying the authorities of the details of everyone with HIV — including addresses. “Things could have gotten out of control and led to measures such as quarantining people with HIV,” remembers David Menadue, who has been involved in HIV community organisations since 1988. “Instead, Blewett set up a national advisory committee on AIDS — which included community representatives.” Blewett also deftly sidestepped departmental processes by appointing the brilliant, though mercurial, Elizabeth Reid as the lead consultant for the development of the green paper setting out Australia’s response. Reid consulted widely as the document was developed, and displayed a passionate commitment to including community-based recommendations. The community also advised on the white paper that followed (which was released in August 1989). Indeed, under the leadership and lobbying of Dr David
Plummer and Bill Whittaker, the Australian Federation of AIDS Organisations (AFAO) became one of the first nongovernmental organisations in the history of Australian public administration to be appointed to a white paper steering committee. The committee was chaired by Blewett, with very senior government and medical representation. I was the AFAO nominee on that committee. These discussions set much of the template for Australia’s First National HIV Strategy, which was granted an investment of more than $500 million. To the annoyance of many, Blewett’s then senior consultant, Michael Clarke, spelt out what percentage of funds needed to be spent on programs for gay men, injecting drug users, and sex workers. In the end, though, it wasn’t about the percentages, per se, but about urgent funding priorities. Another critique levelled at the first strategy is that it merely
stated or summarised what AIDS Councils were already doing on the ground. There is truth in that view. However, having an authoritative national strategy assisted just about everyone involved in that initial response: it allowed community organisations, healthcare services, researchers, and all spheres of government to argue their case. The years 1990 to 1995 saw the maturing of the Australian response. “The partnership already formalised in the First National HIV Strategy, saw us gay men and people with HIV on national and state advisory bodies and respected for our knowledge of what was happening in the epidemic and what needed to be done,” says Bill O’Loughlin — a founding member of Australia’s first independent HIV peer support group. “Most remarkably, we — the HIV community — were recognised as experts and the uniqueness of our experience, knowledge, capacities and wisdom was legitimised.”
Australia’s Eighth National HIV Strategy was released in November 2018. The major principles and commitments in that strategy share a remarkable resonance with those of the first. For example, it addresses the importance of eliminating the negative impacts of stigma and discrimination, and ensures the protection of the legal and human rights of people living with HIV. Both were key components of the 1989 document. In highlighting the intrinsic link between protecting public health and respecting human rights, the Australian response to HIV led the world. As did the involvement of community in devising the first national strategy. “Thanks to the profound insights of those living with HIV, many thousands of young people were saved from infection,” says Bowtell. “And, very importantly, a new model for dealing with other diseases was created and shown to work outstandingly well. It is a legacy of which we can all be proud.” And 30 years on from that first strategy, the essential contributions of community stakeholders, healthcare professionals and researchers, and government health authorities continues . . . n Warren Talbot was the founding executive director of AFAO, president of the AIDS Action Council of the ACT, an assistant secretary in the Australian Department of Health, and executive director of the National LGBTI Health Alliance.
That those with HIV/AIDS might even be consulted, let alone have a determinate and final say in national policymaking, was deeply radical. positiveliving l 10 l WINTER 2019
IN FILM: THE EARLY DAYS OF HIV WITH DAVID MENADUE
BUDDIES
Frameline Distribution First released USA 1985 Re-released 2019 with BluRay and DVD to come Director: Arthur J Bressan Jnr Starring Geoff Edholm, David Schachter “Possibly the most important film you’ve never heard of” — so writes Benjamin Lee in The Guardian, reviewing Buddies, which has been showing in film festivals around the country. The low-budget film had a very limited release in 1985 after its distribution to arthouse cinemas in New York (where it was made), San Francisco, and a few other American cities. It is probably not surprising that it didn’t get broader cinematic release given the hysteria around AIDS at the time, but it has now been remastered and will shortly be available in digital form. It is a time capsule of the period and
1985 Icondrama, USA, 2018 Director: Yen Tan Starring Michael Smith, Virginia Madsen, Michael Childis, Jamie Chung, Aidan Langford
the first film known to be made about HIV/AIDS. The desperation of that period of time runs as an undercurrent to the film and its gripping acting performances. The action in the film happens almost entirely in a hospital ward with AIDS patient Robert (Edholm) and his newly allocated buddy David (Schachter) from the Gay Health Centre. The film portrays the naivety of David who — with
I was interested to compare Buddies with a recently released movie, 1985, to see how the HIV/ AIDS experience is being depicted in more contemporary times. Understandably, perhaps, given there have been a number of movies on the subject since (e.g., Parting Glances, Longtime Companion and Philadelphia), the
supportive parents, a long-time partner and a privileged life in the Big Apple — is almost the opposite of Robert, an activist who fought through the seventies for gay rights. So much of the small detail is spot on — I know firsthand, having experienced some of it myself in the ’80s. Not only Robert’s symptoms — the dry mouth, sores and pale complexion — but also the social
director of this movie chose to locate his story as a prequel to the grimmer images of sunken cheeks, frail bodies and deathbed scenes. Tan shows us the dynamics of a family Christmas for Adrian, a gay man who knows he is HIV-positive and wants to shower his family with final gestures of his love, even though
climate of the time. Upon learning he’s sick, Robert’s family and friends reject him and, save for his buddy, he’s all alone. For his part, David learns much about what life has been like for other gay men less fortunate than himself, and gets closer emotionally and physically to Robert over time. At one point, David asks Robert what he would do if he could be well for one day. “I’d go
down to the White House and protest to the President about the lack of funding for AIDS,” he replies. In the final scene, we see David doing just that, carrying out his buddy’s final wish. As a side note, both the director Bressan and Edholm died from AIDS-defining illnesses within several years of making the film, but it seems neither was actually aware they were HIV-positive at the time.
he can’t bring himself to tell them of his diagnosis. The director has very deftly woven in the stresses that so many gay men will understand (HIV-positive or not) about returning to the family home for Christmas with a giant secret (in fact, two secrets, as they aren’t aware of Adrian’s sexuality
either). The relationships with his butch working-class father, his loving mother and his younger brother (who likes Madonna — enough said!) are so brilliantly depicted. I felt so many resonances with my own life, that I cried. The final scene where Adrian leaves a cassette for his younger brother containing advice on what his life may hold for him (presumably as a gay man) is one of the most touching cinematic scenes I have ever witnessed. Both films should be available online at some stage. And 1985 is currently showing at the Dendy Newtown in Sydney and Cinema Nova in North Carlton, Melboune. They are both important contributions to a story that, while ongoing for many of us, is now at a stage where people can reflect without so much of the angst and, I hope, stigma, that accompanied HIV in the past.
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WHAT’S YOUR PROBLEM? DOCTOR LOUISE ANSWERS YOUR QUESTIONS
LIPO BELLY niGel FroM neWcastle, nsW Writes:
i’m sick and tired of my lipo belly. My doctor says i have to accept that it might be a side effect of some of the antivirals or some of the damage done to my metabolic system from the past. i have had HiV for 20-odd years, but am in good health now. should i go on a diet as my stomach is the only bit of my frame that’s big? are there any risks in dieting, do you think? doctor louise: Lipodystrophy and lipoatrophy are terms that became more commonly used in the early antiretroviral (ARV) era. It was becoming obvious that some people receiving ARV were developing changes in fat distribution on the body — most noticeably fat loss from the limbs and buttocks and face, and fat accumulation in the abdomen and in the
lower-neck region (dorsal-cervical region); this was sometimes called the “buffalo hump”. Unfortunately, there were not as many antiretroviral options available back then as there are now. Fortunately, lipodystrophy and lipoatrophy do not seem to be an issue with the majority of newer antiretrovirals — which I’m assuming you are now on. Treatment options (if this was the cause) are limited, unfortunately. The mainstay of treatment was switching one of the relevant antiretrovirals — depending on past treatments, viral resistance and side effects — though in most cases this did not result in significant improvement, it just ensured things didn’t get worse. Of course, there are other causes of a “lipo belly” as you have alluded to and it would be important for you to get an opinion on this, as well as an assessment of your overall general and cardiovascular health. It would be worthwhile discussing this with your GP and putting together a plan that includes a balanced, healthy diet and exercise. Many people experience frustration when trying to lose weight around the abdominal area and it can be difficult. But good luck!
ITCHY SORES Marie FroM Geraldton, Wa Writes:
i have a skin problem that i’m not sure whether i need to see a doctor about. i have a series of small, itchy sores on my upper body and arms. i am currently on antivirals and undetectable with about 300 t cells. could the itchiness be immune-related? doctor louise: Well, it’s good to be able to answer a number of medical questions in this column but one of the most difficult to discuss in the virtual sense are skin rashes — there are just so many variables and so many potential causes. It’s great to know you’re on the meds, undetectable and have quite a robust CD4 count. Some things that would help me understand possible causes would be knowing what the lowest CD4
count you had prior to starting on the meds. Also, what other meds are you on? Do you have eczema or psoriasis? What makes it worse? Have you tried any treatments? A common itchy skin condition is seborrheic dermatitis, which commonly affects the eyebrow, and facial region and can cause flaky skin and can sometimes itch. Eczema or dermatitis is another skin condition that can cause itchy sores and usually responds well to treatment. It really is important to go and see your GP and tell them about it and have an examination. As you may know, secondary syphilis can present with a truncal rash — it’s not often itchy though — but it might
ECZEMA OR DERMATITIS IS A COMMON SKIN CONDITION THAT CAN CAUSE ITCHY SORES AND USUALLY RESPONDS WELL TO TREATMENTS. be worth having a blood test for that if you feel you could be at risk.
Keep your questions under 100 words and email them to admin@napwha.org.au. l 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.
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victorianews
Share my love Living Positive Victoria unwraps the science of U=U to address what lies at the heart of HIV stigma. it seems that wherever we turn at the moment, the ever-present message is u=u. it’s a powerful life-changing and life-saving message, but what does it really mean and who’s actually taking notice? To the converted — which will be many of you — our understanding of undetectable = untransmittable is a foregone conclusion: we’ve been tested, we’re on effective treatment and we can’t pass the virus on. A lot of the struggle in living with HIV is emotional rather than physical. A lot of us who’ve been HIV-positive for more time than we care to recall live free of any debilitating or confining medical conditions that could stand in the way of living a long and healthy life. However, our mental outlook could do with some nurturing and some stroking. This is where we can put the U=U message to its best work. U=U can be about much more
than just sex. We can now learn to love again, to connect via the heart and the mind, to share so much more than our bodies. To share our love. To share our dreams and our fantasies. It is with this whole approach to U=U that we can build true resilience against the prevailing stigma that we as people living with HIV are faced with on so many levels. It’s this stigma that can hold us back, build walls around us, and stop us from being the people we really want to be, hope to be, and certainly can be. It is with this aim that Living
Positive Victoria developed a set of messages this summer to not only represent the intent behind U=U but interpret it in a way that invites us to explore how U=U can mean so much more than the science it stands for. Creating a set of messages to align with a train of thought
such as this is no simple matter. From a seed of an idea, the message needs to be formed into factual, meaningful and digestible bites of creative wordsmithing. This can involve a whole team of people coming together to arrive at a consensus of thought.
To achieve this, we dissected the meaning of U=U and came up with the many ways that having an undetectable status can improve our lives. We decided that U=U had benefits for the heart and soul, through our need to love ourselves and others, through our need to express and share our thoughts, and our need for meaningful intimacy. It wasn’t too long before the Share My Love campaign was born to convey the message that we can freely share our fantasies, share our touch and share our dreams — along with our bodies. Living Positive Victoria’s Share My Love campaign has become the driver of the U=U message — the message that if you are on effective HIV treatment, you can’t pass the virus on and, equally as important, that being HIVpositive should not be a barrier to sharing who you are and who you want to be.
Craig Burnett new Senior Policy and Research Officer living positive Victoria has appointed craig burnett to the role of senior policy and research officer. CEO, Richard Keane, welcomes Craig to the role and says that he is excited to have someone of Craig’s calibre joining the team. “Craig has long been a strong advocate for the meaningful involvement of young people and diverse communities living with and affected by HIV. He has
strong community links and a history of engagement across a diverse range of roles in the Victorian HIV response, including coordination of the Positive Leadership Development Institute alumni group and as a previous board member of Thorne Harbour Health,” said Keane. “Craig also brings a strong research background to this pivotal role in our organisation. His role is key to developing
policies and submissions that ensure current and emerging issues are not overlooked in broader community sector strategies on intersectional issues that affect our
Craig is a longtime strong advocate for the meaningful involvement of young people and diverse communities living with and affected by HIV.
lives or impact on our human rights as people living with HIV in 2019.” Craig will be involved in liaising with a wide range of sector partners, clients and members, and will be instrumental in establishing community health, public health and social policies and responses to sector developments on behalf of Living Positive Victoria.
living positive victoria | Suite 1, 111 Coventry Street Southbank 3006 | )03 9863 8733 | w livingpositivevictoria.org.au
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Instagram memories Since its launch in 2016, @theaidsmemorial has gathered thousands of tributes from friends and family to loved ones they lost through AIDS. Here are some of the most moving — and uplifting — contributions. LGBT+ ACTIVIST MIKE BALABAN ON HIS HAMPTONS HOUSEMATES: ARCHITECT TOM THATE, DESIGNER TODD SHEARER AND ALAN MUNDT in 1986, i spent the summer in southampton, an nYc-area beach resort, renting an apartment with friends. It was the first of 12 consecutive summers, spending virtually every weekend and many vacations there. Tom Thate, Alan Mundt and Todd Shearer became
my housemates for the next few seasons. I snapped this shot of them embracing on Fowler Beach one day that first summer. Alan would contract AIDS and pass away within a decade. Tom, an architect with Columbia Pictures, moved to LA. When he was diagnosed as HIV-positive
and struggled financially, his family wasn’t helpful. They offered to support him but only if he moved back home to Maryland and managed their real estate properties, and abandoned his “gay lifestyle”. (In fact, I was one of several friends who helped tide Tom over financially at his lowest
point.) While he survived the AIDS epidemic, he later died in an auto accident driving back to LA. Todd is a design professional and the only one of the three still around. Fate is fickle (whether you’re gay or not), so making the most of our time on this planet is all we can strive to do.
NEW ZEALANDER AND AIRLINE WORKER BARRY HAYDEN WHO DIED IN 1996 AGED 31, BY HIS OLD FRIEND JOE BAYCROFT dear b, i was going through your photos recently and i stumbled upon one i had sent you sometime in the early ’90s. on the back i’d scrawled: “Miss b, i wish you were here.” nothing’s changed. I remember when I summoned the courage to go to a gay bar in mid-1984. I remember you were the first person I met there. I remember that despite my general awkwardness we became steadfast friends. I remember your quick wit and
turn of phrase, punctuated by never letting the truth get in the way of a good story. I remember when you moved to Auckland, and I remember following you there. I remember dancing at Alfie’s or the Staircase (or the Es-ca-lada as you called it) and “sampling the suburbs” if we got lucky. You worked for an airline by then, and I remember that you helped me escape the tediousness of ’80s New Zealand, by allowing me to pay for my one-way airline ticket
in instalments. I remember how loyal you were to me, even when you didn’t necessarily agree with my approach or perspective. I remember thinking everything in your life seemed to be coming together when you consulted your doctor about a lesion that had mysteriously appeared on your arm in 1996. I remember when you called to tell me that you were not only HIVpositive, but had “full-blown” AIDS. Twenty-two years later, I have a
laser-sharp memory of taking your phone call in my bedroom, and I remember struggling to comprehend what you were telling me. I remember that I remained optimistic, somewhat buoyed by the success of drug cocktail therapy in the mid-’90s. The next thing I remember was our friend Vaughan calling me in tears to let me know you were gone. I remember trying to reconcile this cruelty with your intrinsic goodness. I couldn’t.
BRITISH MAKEUP ARTIST AND PERFORMER RONNIE BENNETT BY HIS SISTER CHARLI My darling brother, 20 months younger than me, my pal, my partner in childhood pranks, my irritating sometimes but muchloved sibling was lost to aidsrelated cancer on 20 september 1990. I remember the call at work in the summer of 1988. “Hi sis darling, have you time for a chat?” “Yes, of course, boy, you sound worried.” I knew before he even said the words. My
brother had tested HIV-positive. He said, “Don’t worry, sweetie, we fear the worst but hope for the best.” Time passed, he became unwell. During hospital visits I sat reading things out of fashion magazines at his bedside, speaking about my tiny children whom he adored. We laughed, we cried. We reminisced about the showbiz parties where I stood back shyly, not having his
sparkling wit and charm and outrageous sense of humour. On his last day, I had a strong feeling of him needing me. I phoned my boss, took the day off and headed with a sense of dread to Westminster Hospital in London. I found my dear boy in a room, in some pain. The nurses made him comfortable and clean. I sat at his side, told him his sis was here for him. He opened his eyes briefly. I’m
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sure a faint smile was there. I squeezed his hand and told him I loved him and would be there as long as he needed me. At 15.40 his breaths got further and further apart. At 15.45 they stopped. My heart was broken. I called our mother and my sister to tell them our boy was gone. Our beautiful boy, Ronnie — aka Juicy Lucy — model, dancer, makeup artist supreme, and best friend. Miss you everyday.
POSITIVE VOICES POSITIVE PEOPLE SHARE THEIR EXPERIENCES OF LIVING WITH HIV
From PrEP to poz:
my journey as an activist Steve Spencer made international headlines in March by becoming the second Australian — and seventh person in the world — to seroconvert while on PrEP. Here he talks to PL about his activism, advocacy and newfound positive status. “You can only change somebody’s mind by making them laugh first” is my favourite quote by legendary queer icon John Waters. It has guided my activism from day nought — from the ridiculous tattoos I scrawl on my body that all carry a deeper meaning, to the risqué performances I did when I was younger to draw attention to HIV prevention, and to my simple daily interactions where a giggle garners attention. With my latest news though — which prompted the unavoidable clickbait headline of “PrEP failure”, a headline that totally ignores the complexities of what it means to seroconvert whilst using on-demand PrEP — nobody has been laughing. The swings and roundabouts of life can throw curveballs at you and sometimes the only way you can deal with them is through laughter. This universe will always play a joke on you, so it’s best to laugh along so as to not get caught up in the tragedy of life. But the nerve that this news has struck has been interesting to see — the anxieties around HIV have come back up to the surface despite this case changing absolutely nothing about PrEP’s effectiveness.
My journey with queer activism began in the people’s march through Melbourne’s CBD at the AIDS 2014 conference. I was a bright-eyed, bushytailed early 20something HIV-negative gay man, and I was so shaken to the core by the passion, the anger, the love, the pride, the intersectionality of the crowd, that it prompted me to get off my ass and do something. Before that march, my friends and I had attended a string quartet performance of Lyle Chan’s composition based on David McDiarmid’s life, surrounded by David’s artwork in the NGV. I wouldn’t encounter the emotions I experienced in that gallery again until my own HIV diagnosis in December last year. My activism led me to HIV prevention and, more specifically, to PrEP advocacy where the sector and the community were eager for unwavering and proud leaders that would take the science to the community. Inspired by HIV warriors of the past, I joined a handful of other activists and got working. We established our own community-
based organisations. I founded PAN (PrEPaccessNOW) alongside other motivated HIVnegative gay men, and we helped hundreds of Australian gay men access PrEP. These were the wild, early days, where on-demand PrEP alongside daily PrEP were seen for what they were — revolutionary and inclusive, a pill that would not only effectively remove your risk of HIV transmission but would also
finally bridge the sero-divide. Uptake in Australia has been overwhelming, and HIV rates are plummeting — everything we wished for came true. There are enormous similarities between being a PrEP user and a person living with HIV. The exact same things said about me coming out as positive in the media were said about me when I was the first PrEP user to appear on television — all the same
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judgements, the speculation, the accusations, the slut-shaming, the misinformation. The same scythe-wielding ghoul of internalised homophobia and intergenerational HIV/AIDS trauma has chased me across the modern landscape of HIV experience, prevention, and now, treatment. This tells me there’s a deep malaise that even I thought would be smashed with the arrival of PrEP and U=U. The reactions to my diagnosis from certain corners of our community have been shocking, upsetting even, but completely unsurprising. Not long after starting treatment, I achieved an undetectable viral load. It was one of the happiest days of my life and coming out to my friends and family on top of the TIM* float in the Sydney Gay and Lesbian Mardi Gras parade as a proud positive person has lifted and strengthened me to live life to the fullest. My seroconversion has been a celebration of effective testing, treatment and support. As my poz mates have reassured me, I have in fact upgraded from PrEP to an undetectable viral load — the most powerful HIV preventative there is. My seroconversion is anything but an example of a failure and I resent that word being used in relation to my case because none of us are failures — we’re the strongest, most resilient people and I’m proud to be here with you as a part of the HIV-positive community. *TIM: The Institute of Many. If you don't know of this website for HIV-positive peers, check it out today!
THE
backpage
Rates of diabetes are higher in people living with HIV than the general population. Here, then, are some
FOR REDUCING THE RISK OF DIABETES 1 Lose excess body fat. Being overweight is a major risk factor for diabetes. 2 Move that body. A sedentary lifestyle increases the risk of diabetes. 3 Eat lots of fruit and veg. Avoid foods rich in trans fat, saturated fat, and sugar. 4 Swap sugary drinks for water. Sugar-sweetened beverages are linked to obesity and diabetes. 5 Stress less. Adopt relaxation techniques; stress triggers the release of hormones that increase sugar levels. 6 Get a good night’s sleep. Poor-quality sleep increases the risk of obesity and diabetes.
THE INFLUENCERS NEIL MCKELLAR-STEWART
Neil McKellar-Stewart has been providing education and support to people with HIV in the Northern Rivers of NSW for the past 13 years. As ACON’s Health Promotion Officer based in the Lismore office, Neil has been a vital source of information — particularly in the area of HIV treatments — for a positive population that stretches south beyond Grafton and north to the Queensland border. “There are about 450 people with HIV living in the region. It has long been a favoured destination for HIV-positive retirees and LGBTIQ folk in general and has a supportive local culture that embraces diversity,” said Neil. “I feel like I have the best of both worlds. I live in beautiful countryside but with access to excellent clinical services. The staff at the Lismore Sexual Health Service and Lismore Base Hospital are well trained in HIV medicine and you can get most issues dealt with here.” Neil is very much a part of the support network offered to people with HIV in the region and helps patients deal with treatment issues such as drug adherence, interactions and side effects. “When you’ve been in this field for so long and HIVpositive yourself, you know what some of the stresses are going to be — particularly for those newly diagnosed and about to start treatment. Those people who have lived with HIV long-term, too, will have issues with treatments related to various co-morbidities and I do my best to keep up with the latest research on interactions and symptoms to look out for.” And Neil’s contribution doesn't stop there. He coordinates an annual retreat for positive gay men across regional and rural NSW; he organises an annual seminar — Treatments by the Sea — and is an integral member of the TreatAware Outreach Network. Neil is also regularly called upon to share his knowledge and expertise by the national HIV orgs. “I’m happy to stay informed so that I can be a reliable source of information for my peers — it’s great work!”
TRENDING NOW
JACKFRUIT
Originating in India — where it grows in abundance — the jackfruit is the largest tree fruit in the world and can weigh up to 45kg. Once considered a nuisance and left to rot on trees, this spectacularly ugly, pungent fruit has become an unlikely food trend since cornering the vegan market as a popular meat substitute. This is because of its texture, which resembles shredded meat. The most commonly consumed part of jackfruit is the flesh, which is edible both when ripe and unripe (the seeds are also okay to eat). Jackfruit is best used in savoury dishes (such as curries) when unripe; when ripe, it’s best used in desserts — its subtle sweet and fruity flavour tastes of a combination of apples, pineapples, mangoes and bananas. Not only is it versatile, but jackfruit also has an impressive nutritional profile and contains some of almost every vitamin and mineral that your body needs — as well as a decent amount of fibre. It is also rich in several powerful antioxidants that provide various health benefits: jackfruit is good for the skin, the heart, it can reduce the risk of viral infections, and help with blood sugar management. It also boosts the immune system. Not bad for a fruit that until recently was left to gather flies.
QUOTE/UNQUOTE It’s great that I finally have someone added to my family. It’s been too long. I think it’s a movement in the right direction and proves that cure of HIV is possible but I think lots more work needs to be done to help everyone who is living with the virus. Timothy Ray Brown — the Berlin Patient — responds to news of the London Patient positiveliving l 16 l WINTER 2019