PositiveLiving A MAGAZINE FOR PEOPLE LIVING WITH HIV l SPRING 2014
AIDS 2014 SPECIAL EDITION
PositiveLiving
AIDS 2014
ISSN 1033-1788
EDITOr Christopher Kelly
David Menadue Feagan, Alex Mindel, Neil McKeller-Stewart, Stephen Watkins DESIgN Stevie bee Design ASSOCIATE EDITOr
CONTrIbuTOrS Sarah
Positive Living is a publication of the National Association of People With HIV Australia.
Positive Living is published four times a year. Next edition: December 2014 Positive Living is distributed with assistance from
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Positive living PO box 917 Newtown NSW 2042 TEl: (02) 8568 0300 FrEECAll: 1800 259 666 FAx: (02) 9565 4860 EMAIl: christopher@napwha.org.au WEb: napwha.org.au n Positive Living is a magazine for all people living with HIV in Australia. Contributions are welcomed, but inclusion is subject to editorial discretion and is not automatic. The deadline is 21 days before publication date. receipt of manuscripts, letters, photographs or other materials will be understood to be permission to publish, unless the contrary is clearly indicated. n Material in Positive Living does not necessarily reflect the opinion of NAPWHA except where specifically indicated. Any reference to any person, corporation or group should not be taken to imply anything about the actual conduct, health status or personality of that person, corporation or group. All material in Positive Living is copyright and may not be reproduced in any form without the prior permission of the publishers. n The content of Positive Living is not intended as a substitute for professional advice. FrONT COVEr ArT: jOHN bIgWOOD bACK COVEr PHOTO: INTErNATIONAl AIDS SOCIETY/STEVE FOrrEST
PL goes digital Welcome to this special AIDS 2014 edition of Positive Living (PL). The largest health conference ever held in Australia saw 13,600 delegates converge on Melbourne from more than 200 countries. Over the following pages we’ve news of some of the most important scientific advances presented at the conference as well as features on the key issues of the day such as stigma, remission, women’s rights, and youth involvement. This is a special edition for another reason. From December, PL will be a digital magazine available online through NAPWHA’s website and in flipbook format. You’ll also be able to access the magazine via PL’s Facebook page. If you’d like a flipbook version of PL, send your email address to christopher@ napwha.org.au. However, there will be a limited print run for those wanting a hard copy of PL — see left for subscription details. Over the past 25 years PL has taken on many guises: it began as a community newspaper in Victoria to become the only nationally distributed magazine of its kind in Australia. In that time, PL has sought to inform and support people living with HIV across the country. We will endeavour to do the same into the future as PL continues to evolve. Christopher Kelly, Editor Positive Living
20th International AIDS Conference Melbourne, Australia July 20-25, 2014
NEWS
Pledge to eliminate new HIV transmissions Every state and territory health minister stands united behind a commitment to eliminate all new HIV transmissions in Australia by the end of 2020. The announcement was made on day one of the conference by the health ministers from Victoria and NSW, David Davis (middle) and Jillian Skinner (right), and conference co-chair Professor Sharon Lewin (left). The declaration is the core objective of the AIDS 2014 Legacy Statement — a detailed and wideranging plan drawn up by research, government, In what is being hailed as “the single most important advance” presented at the conference, researchers have found a way to uncloak hidden HIV in CD4 cells. A reservoir of the HIV virus can hide in the body for years and reactivate should a patient stop taking antiretroviral drugs. Experts from Aarhus University Hospital in Denmark have discovered that anti-cancer drug
community and scientific leaders earlier this year. Professor Lewin said: “[Australia] will be the first
country to have such ambitious targets . . . and I think we should be incredibly proud of that.” all cells and get them killed, then you have a cured person.” Despite the excitement surrounding the news, Dr Søgaard, stressed it was early days. “We’re still learning about this disease and where it hides, and it is a really, really tricky disease to cure because it hides really well and can hide for an indefinite period of time.” More page 9
Kick and kill romidepsin releases latent HIV from infected cells. Dubbed the “kick and kill” approach, it is hoped that once the virus is exposed it will be possible to eliminate it. “In theory,” said senior researcher Dr Ole Søgaard, “if you can activate
AIDS-free world within reach
In a special address to conference, former US president Bill Clinton told delegates that an AIDS-free world was “just over the horizon”. Before a packed hall, Clinton reflected on the global progress made so far in overcoming the HIV epidemic, as well as the challenges that lie ahead. Ending mother-to child-
transmission of HIV, and supporting children with HIV was crucial to ending AIDS, he said. “Almost 50% of all new paediatric infections occur during the breastfeeding period. So keeping these women in care until the end of the breastfeeding period is the single most important thing we can do to achieve an AIDS-free generation,”
said Clinton. Clinton likened the AIDS 2014 gathering to more of a movement than a conference, and encouraged delegates and those involved with HIV around the world to step up the pace and continue to make in-roads in the global response to HIV: “We dare not walk away and all of us should lead the way.”
CONTRIBUTORS (FrOM lEFT) Christopher Kelly puts the spotlight on stigma l Sarah Feagan reports from the Women’s Networking Zone l Alex Mindel gives youth a voice l Neil McKeller-Stewart explains the latest remission science l Stephen Watkins asks delegates to share their stories l David Menadue reflects on conference highlights PositiveLiving l 2 l SPrINg 2014
Former president Bill Clinton: “All of us should lead the way.”
Something to say? Write to us christopher@napwha.org.au
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20th International AIDS Conference Melbourne, Australia July 20-25, 2014
NEWS
Drug combo tackles TB-HIV A “game-changing” combination pill dramatically shortens the time it takes to treat patients with tuberculosis (TB) it was announced at AIDS 2014. Results from a phase IIb trial found the drug — dubbed PaMZ — killed the TB bacterium at a far faster rate than standard therapy. The regimen is also less toxic than current treatments, and much more affordable. TB is a leading killer among people living with HIV, resulting in one-fifth of all HIV-related deaths. Up until now, TB-HIV co-infection has been problematic to treat as therapies for the two conditions are incompatible due to side effects. The PaMZ regimen comprises two new drugs — PA-824 and moxifloxacin — alongside an existing treatment, pyrazinamide. Standard TB treatment can last up to two years and cause permanent hearing loss. The bacterium that causes TB also grows increasingly resistant to existing drugs. Projected to be a once-daily oral treatment, it is hoped that PaMZ will offer a simpler approach to treating TB and help save millions of lives. (TB is second only to HIV/AIDS as the world’s greatest killer; in 2012 1.3 million people died of the disease.) Financed in part by the Gates Foundation, PaMZ will advance to a global phase III clinical trial in November, involving 1,500 people, including about 300 PLHIV. Top-line trial results are expected in 2017.
Eradicate poverty and you’ll eliminate HIV
Protesters disrupt Gilead conference session
Activists target Gilead over cost Activists held a protest at conference against pharmaceutical giant Gilead. Chanting “pills cost pennies, greed costs lives” a group protesting the high price of a new hepatitis C drug, Sovaldi, interrupted a speech by Gilead executive, Gregg Alton. Sovaldi is an oral drug that can cure HCV after just a few months of treatment. But the drug comes at a cost — US$1,000 a pill to be exact (or $84,000 for a typical 12-week course). However, a
researcher from the University of Liverpool has found that a generic version of the drug would cost, per treatment, as little as US$150 to mass produce. Gilead says the high cost is necessary in order to reclaim research and development expenditure. This comes despite expectations that sales of Sovaldi are likely to exceed US$10 billion by the year’s end, putting it on track to become one of the world’s best-selling medicines.
Melbourne remembers MH17 victims honoured
Hundreds of people gathered in Melbourne’s Federation Square for a candlelight vigil in remembrance of the 35 million people worldwide who have been lost to HIV/ AIDS since the epidemic took hold more than 30 years ago. The vigil — an International AIDS Conference event — also allowed participants the opportunity to honour the six delegates who died aboard MH17. The vigil is held in part to also acknowledge scientific and medical advances in HIV research as well as to pay tribute to grassroots community
organisations for their commitment in the fight against HIV/AIDS. During the vigil, people were invited to call out the names of their loved ones lost to the disease before raising candles during a minute’s silence. Earlier, parts of Melbourne’s CBD came to a halt when a ‘mobilisation march’ made its way through the city centre. Hundreds of people marched from the Convention Centre to Federation Square to protest for more research funding, and for an end to stigma and discrimination.
The 20th International AIDS Conference opened with a minute’s silence to honour six delegates who died en route to Melbourne aboard Malaysian Airlines flight MH17. Among the dead was former president of the International AIDS Society (IAS), Professor Joep Lange. Outgoing IAS President, Françoise Barré-Sinoussi, told delegates: “The extent of the loss of our colleagues and friends is still hard for me to comprehend or express.” Keynote speaker and AIDS campaigner Michael Kirby also addressed delegates saying those who died would “demand we renew and redouble our efforts” to eliminate HIV. Conference co-chair Professor Sharon Lewin said she hoped delegates would “fight on for a cure in memory of their colleagues”.
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Talking to conference, Sir Bob Geldof said the HIV epidemic in low-income countries is “inextricably linked” to poverty, and strongly criticised wealthy nations for reneging on foreignaid commitments. Singling out Australia’s decision to reduce overseas direct aid, Geldof accused our politicians of breaking their word: “You can’t mess around with a sovereign promise to the poor; they’re too weak, they’re too
Geldof: Australia obliged to help world’s poor vulnerable. It’s like beating up an infant.” Geldof added that Australia’s wealth obliged it to help the world’s poorest people: “Remember, you’re one of the richest countries in the world,” he said. In an often spirited discussion, the renowned anti-poverty activist said the “preposterous reluctance” of governments to fund HIV programs in developing countries is “disgraceful”, especially as the journey to the end of the HIV epidemic is “in the last mile”. Geldof also blamed gender inequality and religious extremism throughout Africa for heaping shame and stigma upon people living with HIV.
AIDS 2014
Anti-gay laws fuel HIV Anti-gay laws deter HIV-positive men from seeking services and treatments, according to a global survey presented to conference. Conducted by the San Francisco Health Department, the 2012 survey recruited 4,000 respondents from communitybased organisations around the world. The global study found that, by impeding access to services
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NEWS
New strategy unveiled Ahead of conference, Federal Health Minister Peter Dutton launched a new strategy to target HIV in Australia. The Seventh National HIV Strategy includes the aim to reduce sexual transmission of HIV by 50% by 2015 — regarded as a key step towards virtually eliminating new HIV infections in Australia by 2020. Unveiling the document, Dutton also announced he was lifting restrictions on HIV hometesting kits. Manufacturers of the oral swab tests — likened to home pregnancy tests — will be invited to apply for approval to distribute them throughout Australia. Already available in America, and given the green light in the UK, the DIY testing kits will be
Health Minister Peter Dutton at a NAPWHA reception in Parliament House
sold directly to consumers, allowing people to treat early so as to help prevent the virus from spreading (around 7,000 people
with HIV in Australia are currently undiagnosed). HIV home-testing kits will be of particular value to people without
easy access to health services, such as those living in remote areas. Dutton also pledged to improve access to HIV treatments. Antiretroviral medicines are currently only available through hospital pharmacies; from next year, PLHIV will be able to collect their meds from high-street pharmacies. Of the new National HIV Strategy, NAPWHA President Robert Mitchell said: “We hope this will galvanise Australia’s future HIV response and also encourage other countries to take bold and decisive measures towards ending HIV.”
Call to decriminalise sex work Ending
and treatments, legal discrimination has a direct impact on public health. Another study from Nigeria — a country that mandates a 14-year prison term for anyone in a samesex union — found that people who lack treatments and services are more likely to transmit HIV. Many African men who have sex with men do not identify as being gay and are quite often married. Anti-gay laws prevent these men from seeking out education, free condoms and HIV testing. This increases the risk of transmitting the virus to sexual partners. “From Nigeria, we get a very clear answer that [anti-gay laws] are aiding and abetting the virus,” said incoming president of the International AIDS Society, Chris Beyrer, “making it much more difficult, if not impossible, to provide basic services to people in need.” like us at facebook.com/ positiveliving mag and receive all the latest HIV news.
Decriminalisation of sex work is critical to controlling the HIV pandemic, according to authors of a series of research papers published in the Lancet medical journal. The papers, presented at the International AIDS Conference, also highlight the urgent need to recognise sex workers’ human rights. Sex work remains criminalised in most parts of the world with laws directly criminalising sex workers, their workplace, and sometimes their clients. As a result, sex workers (whether male, female and transgender) are routinely subjected to repression, stigma, violence and abuse — all causal elements preventing access to services and treatments. “Across all settings, decriminalisation of sex work could have the largest impact on the HIV epidemic among sex workers over just ten years,” said Dr Kate Shannon, lead author of the papers. The Lancet papers show the AIDS pandemic becoming increasingly prevalent in marginalised communities. Criminalising sex work pushes
both workers and clients to the fringes of society. This in turn lowers safeguards and exacerbates the risk of violence and abuse. A reduction in sexual violence could see HIV transmission rates decrease by around a fifth, say the authors; encouraging sex workers to take up antiretroviral treatment would cut rates of infection by a third. But decriminalisation would have the biggest impact by far, with HIV infections reduced by up to 46% over the next decade. Fear of arrest prevents sex workers from seeking protection from HIV infection. Indeed, according to the Lancet papers, sex workers report having condoms regularly confiscated by police, who regard them as evidence of criminal behaviour.
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There is testimony, too, of sex workers being violently and sexually abused by police and other state authorities. It is imperative, say the authors, that sex workers’ human rights are recognised and upheld. Without such a global commitment, the goal of an AIDS-free generation cannot be achieved. The International AIDS Conference attracted sex workers from more than 30 countries around the world — among them Sienna Baskin from the Sex Workers’ Project in New York. “Criminalisation can have a direct impact on access to healthcare,” said Baskin. “Treatment requires stability and consistency. Being at risk from criminalisation disrupts this.” Janelle Fawkes of the Australian Sex Workers’ Association agrees: “HIV prevalence is greatly reduced in places where sex work is decriminalised,” said Fawkes. “What we’re calling for now is the long-awaited commitment from governments to pursue decriminalisation of sex work as a response to HIV and as a human rights priority.”
AIDS by 2030 In a speech before conference, UNAIDS Executive Director Michel Sidibé told delegates: “Today I am calling for ending AIDS by 2030.” In order to reach that goal, by 2020 90% of people would need to be tested; 90% of people living with HIV would need to be on treatment; and 90% of people on treatment would need to achieve suppressed viral loads. To achieve 90% coverage, Sidibé acknowledged that more funding would be required, human rights barriers would have to be eliminated, mass testing would need to be conducted, and there would need to be an urgent expansion in the numbers of healthcare workers to provide necessary treatment. Defending what many regard as an optimistic target, Sidibé said: “If we are not ambitious we should not be in this business.”
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20th International AIDS Conference Melbourne, Australia July 20-25, 2014
A CALL TO ACTION It’s time to step up the pace so that the First Peoples of Australia don’t get left behind, reports Christopher Kelly. The statistics make for grim reading: the proportion of newly diagnosed HIV cases amongst people who inject drugs is four times higher in Aboriginal and Torres Strait Islander peoples than in non-Indigenous Australians; rates of HIV among Aboriginal and Torres Strait Islander women are four times that of non-Indigenous women; there is a far higher diagnosis rate of HIV reported among Aboriginal and Torres Strait Islander people at a younger age than in the non-Indigenous population. According to James Ward, Associate Professor in Indigenous Health at the Baker IDI Heart & Diabetes Institute, Melbourne, such statistics have “grave implications” for the First Peoples of Australia. Ward co-convened the International Indigenous Pre-Conference on HIV & AIDS held in Sydney a couple of days prior to the International AIDS Conference itself in Melbourne. The Pre-Conference (entitled “Our Story, Our Time, Our Future”) gave Aboriginal and Torres Strait Islander people most at risk from HIV — gay men, injecting drug users, brotherboys, sistergirls and women — a chance to share their stories. It also launched the Eora Action Plan — the aim of which is to reverse the above statistics by adopting more ambitious targets in response to HIV in Aboriginal and Torres Strait Islander communities. (The Eora Action Plan is so called because the Eora Nation lived in the Sydney basin, home to generations of Aboriginal and
Torres Strait Islander peoples long before Australian settlement.) Australia’s historical response to HIV was to adopt a participatory partnership approach — an approach that has drawn much praise worldwide. Even so, Ward believes government and community organisations need to urgently raise the game so as to avoid a sharp escalation of
HIV among Australia’s Indigenous population. Ward is concerned that HIV among Aboriginal and Torres Strait Islander peoples could mirror the pattern experienced by Canada’s First Peoples, who in 2013 made up 4% of the total population but accounted for 23% of cases of HIV.
Among the goals laid out in the Eora Action Plan are: a commitment to reduce the number of newly diagnosed HIV cases within the Indigenous community by 50%; an aim to reduce the rates of other STIs by 50%; calls for antiretroviral drugs to be made available, accessible and correctly utilised by 80% of Aboriginal and Torres Strait Islander peoples living with HIV; and a pledge to eliminate stigma and discrimination within the Indigenous community — particularly towards gay men, people who inject drugs and sex workers. One of biggest concerns for the Indigenous community is the high rate of STIs, especially among young people. According to the Kirby Institute, notification rates of chlamydia in 2012 were four times higher among Aboriginal and Torres Strait Islander peoples than the non-Indigenous population; syphilis was five times higher; and gonorrhoea 21 times higher. “If HIV enters these communities,” said Ward, “it would rapidly escalate because of the prevalence of these STIs.” Injecting drug use (IDU) is another worry. IDU accounts for almost 60% of Canada’s HIV diagnosis among the country’s First Peoples. “All the signs are there that we could come down the same path as Canada,” said Ward. “Now is the time to address this area.” And time is of the essence: the First Peoples of Australia, said Ward, are at a crossroads. “Over the last few years, numbers have increased and the differential between the Indigenous and non-Indigenous [HIV] rate has increased,” he said. “We can either scale up our actions to reduce the risk of HIV, or continue along the same path and allow HIV to take hold in our communities.”
Connecting Indigenous youth The Indigenous Pre-Conference also saw the launch of the Aboriginal Nations Torres Strait Islander HIV Youth Mob — fortunately, ANTHYM for short. ANTHYM is a network of Aboriginal and Torres Strait Islander youth created to lift up the voices of Indigenous youth in the HIV response. The aim of ANTHYM is to promote safe sex and safe injecting messages, HIV prevention, and to tackle stigma and discrimination within Aboriginal and Torres Strait Islander communities. Adopting a spirit of peer mentorship, ANTHYM is a group for youth, led by youth. “Our first step should be around educating people on how to prevent infection and to break the silence on HIV/AIDS,” ANTHYM cochair Tarra Liddy said. “We must bring this issue to the surface and encourage [Aboriginal and Torres Strait Islander] people to participate in open communication about HIV/AIDS without fear or rejection or discrimination — and in a way that is culturally appropriate.” ANTHYM is currently looking for 18 to 26-year-olds to form a committee, and to help promote messages of safe sex and safe injecting practices. Visit: anthym.org/expressions-of-interest/
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AIDS 2014 Medical science may have advanced but, as Christopher Kelly reports, attitudes toward people living with HIV remain in a shoulderpadded time warp. A key objective of AIDS 2014 was “to broaden the understanding that the same barriers that have fuelled the epidemic over the past 30 years still exist today”. Stigma is one of those barriers. And it’s as impenetrable as ever. Known for not mincing words, Bob Geldof told conference that HIV/AIDS is perceived as a problem for “junkies, gays, hookers and Africans” and urged delegates to berate those who reveal their prejudices by blaming HIV/AIDS on lifestyle choices. Such attitudes ensure people living with HIV continue to be shunned by families, friends, their community, and the wider population. This in turn leaves people living with HIV grappling with feelings of shame, and low self-esteem. But the rippling effects of stigma are more farreaching than that: stigma facilitates the spread of the disease. Because of stigma, people are reticent to get tested. "People are sick," said Michael Kirby, AIDS campaigner and conference speaker, "the best thing is to get people onto care and that means getting them to get the test and they won't take the test if they’re ashamed of themselves or frightened of the stigma." An unwillingness to get tested means people are ignorant of their status and therefore likely to infect others. These people are often diagnosed when the virus has progressed to AIDS. This makes treatment less effective and causes early death. Because of stigma, people with HIV hide or ignore their status, and refuse treatment. This makes them more infectious, putting their health and the health of their sexual partners at risk. Those most vulnerable to HIV — gay men, sex workers, injecting drug users — are the most stigmatised. They’re driven underground, far removed from essential treatment and services. “Too many people are afraid to see a doctor to determine
20th International AIDS Conference Melbourne, Australia July 20-25, 2014
STUCK IN THE ’80S
whether they have the disease or to seek treatment,” said UN Secretary-General Ban Ki-moon. “[Stigma] helps make AIDS the silent killer, because people fear the social disgrace of speaking about it, or taking easily available precautions. Stigma is a chief reason why the AIDS epidemic continues to devastate societies around the world.” According to UNAIDS, efforts to combat stigma and discrimination are essential in
halting and reversing HIV. “Advancing human rights and gender equality” are “strategic pillars” in the global response to the epidemic. A UNAIDS report states more than two out of three of the 35 million PLHIV are in sub-Saharan Africa. Stigma is among the number one reasons why PLHIV are being left behind within the region. Often, the stigma stems from religious extremism. Many African countries —
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such as Nigeria, Zambia, Zimbabwe and Uganda — have embraced a hard-right Christian rhetoric. Governments and evangelists preach that homosexuality, prostitution and promiscuity are sins. HIV/AIDS is God’s retribution. Rather than offered help, PLHIV are condemned to Hell. On a national level, anti-gay laws further prevent those at risk of HIV seeking help. Last year, a UNAIDS study found that 78
countries worldwide listed homosexuality as a crime. A study from Nigeria — a country that mandates ten-year prison terms for anyone promoting homosexuality, including HIV/ AIDS workers — found people who are criminalised and stigmatised are more likely to lack education, treatment and services, and therefore more likely to transmit HIV. “We need to shout out loud that we will not stand idly by when governments, in violation of all human rights principles, are enforcing monstrous laws,” said conference chair, Françoise Barré-Sinoussi, at the AIDS 2014 opening ceremony. Such stigmatising laws are now, largely, a thing of the past in Australia — but if you think we’re more enlightened when it comes to PLHIV, think again. Although 2014, sadly — understandably — an HIV-positive person is unlikely to disclose their status at their workplace for fear of social isolation; parents of positive children keep silent to friends and relatives; upon disclosing their status to sexual partners many PLHIV experience kneejerk, panicked reactions; gay men on Grindr stipulate hook-ups “must be DDF” — drug and disease free (i.e. HIV). To help tackle this stigma Queensland Positive People has launched a video campaign called ‘Stuck in the ’80s’. The campaign aims to break the ignorance still surrounding HIV. It reassures people, for instance, that HIV can’t be caught from a communal coffee mug. But surely no-one thinks that anymore. We’ve moved on from sterilising toilet seats, right? Seems not. A survey from the HIV Foundation has found that onein-six Queenslanders think you can get HIV from sharing a drink, or a kiss. “I thought I’d picked up a report from 20 or 30 years ago,” said HIV Foundation chief executive Tony Majer. The survey also found that 47% of respondents would not welcome someone with HIV into their family; 46% would not want someone with HIV looking after their children; and 42% would not share a unit with someone with HIV. Much like the “Grim Reaper”, or Kajagoogoo, isn’t it time such prejudices were left back in the ’80s?
AIDS 2014
IT WAS IN THE WOMEN'S NETWORKING ZONE THAT THE REAL INTERNATIONAL AIDS CONFERENCE TOOK PLACE, AT LEAST IN TERMS OF WOMEN’S RIGHTS ISSUES, REPORTS SARAH FEAGAN. Women account for more than half of the 35 million people living with HIV worldwide. But while women are the most affected they remain the least respected, facing stigma, discrimination and violence. However, don’t regard us as victims. Women living with HIV (WLHIV) are leading the way forward in communities across the globe. We are taking action to increase education, expand access to sexual and reproductive health services, address gender discrimination and violence, help each other negotiate safer sexual relations, and provide access to female-controlled prevention methods such as the female condom. Many such women could be found in the Women’s Networking Zone (WNZ) at AIDS 2014. The WNZ was a vibrant, inclusive, exciting, safe space designed to promote dialogue, forge new networks, raise the visibility of issues directly affecting women living with HIV, champion their leadership, and promote the global exchange of experiences, abilities and ideas. The zone advocated for the following commitments: that peer mentoring or counselling be made available to all women at the time of HIV diagnosis; that a target of 30% be set for WLHIV on HIV advisory bodies; and that sexual and reproductive health and HIV healthcare be offered as an integrated service. Over six days, the WNZ ran a full program of daily dialogues, workshops and presentations organised around four major themes: access to antiretroviral therapy and healthcare; sexual and reproductive health and rights; violence and discrimination; criminalisation and justice. From speakers’ accounts, access to treatment — not only across national borders, and between high-income and low-income countries, but within nations
SNAPSHOT l Globally, 54% of all adults living with HIV are women
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in the
ZONE + themselves — is erratic and inconsistent. Stigma and discrimination were also found to create very real barriers to healthcare access for WLHIV. Put simply: women are being denied life-saving treatment because they are women. Religious and gender-based violence — as well as women's low social status, both within the family and within the wider community — was also shown to have a great and often unappreciated impact on access to treatment and services. Women commonly refuse treatment because of the violence and isolation they’d suffer if their HIV status became known. The level of stigma women face in the health service sector is vast, and these battles are still being fought. Themes surrounding sexual and reproductive health and rights include: the forced or coerced sterilisation of WLHIV; discrimination experienced by WLHIV in the maternal and child
l Young women worldwide make up more than 60% of young people living with HIV; in sub-Saharan Africa, their share jumps to 72%
healthcare setting; inability to access reproductive healthcare; and a lack of knowledge by healthcare providers of issues such as menopause and cervical cancer and how they particularly affect WLHIV. Speakers argued for a need for more consistency in services and called for HIV and sexual and reproductive healthcare to be integrated into a system that respects the bodily autonomy and the human rights of WLHIV. Positive women at AIDS 2014 also gave testimony to the pervasive effects of violence, stigma and discrimination on the general quality of life of WLHIV. The fear of, or experience of, violence and discrimination severely impacts the lives of WLHIV globally; it affects their sense of self-worth, and their physical and mental health. Gender-based violence was shown to occur across cultures and regions, and to increase a woman's risk of exposure to HIV. Furthermore, a woman's positive status puts her at greater risk of violence. When the focus turned to criminalisation and justice it was made clear that many aspects of women's lives are criminalised in relation to their HIV status: from sexuality, to childbearing, adoption and breastfeeding. Disclosure also emerged as an important issue: it was found that the burden of disclosure (and possible criminal prosecution when failing to disclose) disproportionately falls on WLHIV in heterosexual relationships. While all people living with HIV yearn for a cure and a vaccine to achieve zero new infections, a human rights-based approach that addresses stigma, discrimination and criminalisation of women living with HIV is essential. As the largest affected population, women's voices must be a part of the conversation, and addressing gender justice must be a part of the solution. As was stated at conference: “the face of the pandemic is a female face”, and as such, women are central to the response to put an end to the HIV/AIDS epidemic. AT LEFT Sarah Feagan at the AIDS 2014 moblisation march
l In 26 of 31 countries with a generalised HIV epidemic, less than 50% of young women have comprehensive and correct knowledge about HIV
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l An estimated 50 million women in Asia are at risk of acquiring HIV from their intimate partners. Source: UN Women
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20th International AIDS Conference Melbourne, Australia July 20-25, 2014
Seen but not heard AS ALEX MINDEL REPORTS, YOUNG PEOPLE WITH HIV INCREASINGLY FEEL THEY’RE SHUT OUT OF THE GLOBAL RESPONSE. “At the last minute, the decision-making happens with doors closed,” laments L’Orangelis Thomas, a 25-yearold HIV activist from Puerto Rico and plenary speaker for AIDS 2014. Thomas is keen to point out that, while young people are encouraged and supported, they’re not included in the decision-making processes and their voices are not being heard. “We hold lots of discussions around tables, but documents are made by other people from government and we don’t have the chance to be there,” said Thomas. “We are doing a lot of things but we are not always validated for our efforts.” And when young people are asked to participate, they’re often there as a token gesture. “Sometimes we are invited to these spaces just to say that 'young people were there’,” said Thomas. The International AIDS Conference helped highlight that adolescents and youth have not received sufficient attention in programming, policy or research efforts. Without significant attention and investment in this area, it will not be possible to
achieve the AIDS-free generation conference was told is within reach. Young people remain one of the most vulnerable groups to HIV infection due to a lack of access to comprehensive sexual and reproductive health education and healthcare services. They are further isolated by social, economic and cultural barriers and by human rights violations. HIV is now the second-leading cause of death amongst adolescents aged 10-19, and the number one cause of death in Africa. Globally, an estimated 5.4 million young people are living with HIV; there are 2,100 new HIV infections among young people every day. “Despite overall downward trends in HIV-related deaths, 10 to 19-year-olds are the only age group in which HIV-related deaths continue to rise, and the rate of new infections in this group is not going down,” said chief of HIV at UNICEF, Craig McClure. “What we need to be doing is putting more of an effort in to children and adolescents — beyond just improving access to testing and treatment services.
Kaushi Kogar addresses protesters at the mobilisation march
“What we’re realising now is that we need to pay attention to the issues that are important to young people. To make sure they have access to comprehensive sex education and can live within societies that love and accept them for who they are.” In the lead-up to AIDS 2014, 100 passionate young leaders from 56 countries engaged in the Youth Pre-Conference, organised by the Melbourne Youth Force (MYF). At the conference itself, the MYF created a Youth Action Plan (YAP) with tangible and
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actionable goals, focusing on the four themes of Treat, Reform, Educate and Love. The YAP was presented at the youth symposia Beyond 2014: Youth Leadership in the AIDS Response. It states that: The needs of adolescents and young people cannot be ignored any longer. Despite the advances in the fight against AIDS, we are still experiencing a crisis in the adolescent and youth pandemic. We have the tools to address this crisis, but we need governments, policy makers, and healthcare
professionals to commit to real and effective change by 2020. “It’s pretty easy,” said Kaushi Kogar, co-chair of the MFY advocacy committee. “It’s about making sure that young people have access to affordable [antiretroviral] drugs; that we’re supported by laws that protect youth and recognise our right to the highest attainable health; and ensuring that young people are provided with sexual education that isn’t afraid to tell them about prevention, treatment and testing of HIV. But it’s also about love, removing the stigma and discrimination that is still associated with HIV.” The Pre-Conference clearly demonstrates that young people have the courage and capacity to speak out on issues that need addressing. Young people such as Kogar and Thomas are stepping up as leaders, making positive changes in their communities and are calling for a more meaningful involvement in the future global response. It’s time they were heard. To view the Youth Action Plan visit: youthforce.co
AIDS 2014
20th International AIDS Conference Melbourne, Australia July 20-25, 2014
REMISSION While a cure for HIV remains elusive, sustained remission maybe the next best thing. Neil McKellerStewart reports. To date, there have been several instances of HIV remission (remission being when the virus is not active enough to require treatment). Arguably the most famous case is the ‘Berlin patient’ — Timothy Brown — who, after a bone marrow transplant, remains off treatment and virus-free six years on. And, as revealed at AIDS 2014, two Australian HIV patients have also been discovered to be virus-free. The latest science on remission strategies was very much the focus of a two-day, preconference satellite symposium, Towards an HIV Cure, attended by around 300 researchers and community representatives from around the world. Whilst antiretroviral treatment (ART) drives HIV viral load to undetectable levels, some HIV remains circulating in the blood. Additionally, a ‘reservoir’ of long-lived immune system cells containing HIV persists indefinitely. HIV can awaken from this reservoir and enter the circulation system. That’s why — as recently evidenced by the ‘Mississippi baby’ and the ‘Boston patients’ — viral load rapidly returns to pre-treatment levels once ART is discontinued. But what if this latent reservoir of HIV could be awakened, attacked and killed? A Danish trial — headed by Ole Søgaard of Aarhus University Hospital, Denmark — assessed the safety of a cancer drug called romidepsin and to what extent it can reactivate HIV from latency. This
Ole Søgaard presents a big step forward to finding a vaccine was a small non-randomised interventional trial involving six patients with HIV who were given romidepsin three times a day for 14 days. The results were mixed: promising as far as safety and the effect on inducing reactivation from latency; and perhaps disappointing as far as revealing any significant change in reservoir size. Still, the Danish study is regarded as a big step forward to finding a vaccine for HIV. A clinical trial combining a therapeutic vaccine (Vacc-4x) and romidepsin is ongoing. Meanwhile, Dr Vicente Planelles of the University of Utah, USA, reported on a new
family of heterocyclic compounds (benzotriazole analogues), which in laboratory studies very effectively reactivated latent cells containing HIV. One of the appealing features of these compounds is that they don’t increase some of the chemical messengers that cause inflammation and other cell damage. When tested with T cells from HIV-positive people, one of these compounds was able to reactivate virus from people with undetectable viral loads. The symposium heard of other compounds under lab investigation which stimulate HIV replication through different
mechanisms. Together, these new compounds add a whole new range of possibilities in shocking HIV out of latency. Other research presented at the symposium related to work being done on targeting and killing HIV sanctuaries in tissues. It has been known for almost a decade that lymph-node follicles produce a range of immune cells and are sites where HIV replication is active and where substantial reservoirs of HIV are located. Dr Rama Amara (Yerkes National Primate Research Centre, Emory University, US) reported research in rhesus macaque monkeys which were
While acknowledging there will be rebounds along the way, Françoise Barré-Sinoussi — who discovered the HIV virus — believes remission is more achievable than cure. PositiveLiving l 9 l SPrINg 2014
vaccinated against, and then challenged by, infection with SIV (the monkey form of HIV). Compared to the unvaccinated monkeys, the vaccinated macaques had much lower proportions of HIV-infected cells (in blood, lymph nodes and rectal tissues). They were also found to have higher proportions of CD8 cells able to kill HIV-infected CD4 cells. This data suggests it may be possible to develop vaccine-based therapies to reduce or eliminate virus-infected cells. Exciting news indeed, indicating that much more is being discovered about, not only where HIV hides but, more crucially, how to eradicate it. Conference chair Françoise Barré-Sinoussi — who discovered the HIV virus — believes remission is more achievable than cure. And while acknowledging there will be rebounds along the way, she remains optimistic that sustained remission strategies will be found. “To achieve long-term HIV remission we will likely need to tackle the problem on multiple fronts,” said Barré-Sinoussi. “Lowering as much as possible the number of long-lived, latently infected cells present in the body, as well as bolstering the host defence. One cannot be done without the other.” Expect to hear a lot more about interventions that might lead to sustained HIV remission. Australia is more than lifting its weight in this regard, continuing to contribute funding and expertise to remission research. As the cure symposium showed, progress towards remission is accelerating and the latest research suggests that the prospect of an AIDS-free generation is indeed within reach.
AIDS 2014
20th International AIDS Conference Melbourne, Australia July 20-25, 2014
POSITIVE VOICES STEPHEN WATKINS ASKED THREE INTERNATIONAL DELEGATES TO SHARE THEIR EXPERIENCE OF LIVING WITH HIV NJ, 32
Maura, 36
I was a blood donor and I found out I was HIV positive there was a problem with when I went for my first the blood. I was told I was pregnancy check-up at the HIV positive over the phone antenatal clinic. At that time whilst at work and it was a there was nothing about HIV massive shock. My parents in PNG; zero in 1997. So there didn’t know I was gay. I could tell them I had HIV and I was no AIDS council, no programs, no support — nothing. knew they would support me because it is a medical I was told I was positive by my gynaecologist and just condition. But being gay is still seen as something very bad sent home. I told my husband, and asked that he go for a in Macedonia. test; they checked him and he was also positive. But he I started treatment almost straight away. But in denied it. “It’s not our blood,” he said. “They mixed it up Macedonia we sometimes struggle with the supply of HIV in a laboratory.” medications. I was on one type of medication and then, all I never got any counselling, I was left totally alone. of a sudden, the country stopped receiving shipment of When I had my baby I was put in the infectious diseases that drug. I then had to start a different treatment and I ward and it freaked me out. It was a very tough time for will now always have resistance to that initial drug. Access me. When I came back to my home with my baby I was the to treatment, making sure that the drugs are always talk of the community; people would look at me, stare at available, is a major thing my country needs to improve. me, and whisper. After a while I started to I disclosed my status publicly in realise that I could do 2002, which helped change things. something to help other And going on treatment as well people diagnosed positive. changed things. Then I got invited to Through my work in this international meetings about HIV, field I got more confidence and that made people curious and and I decided to tell my allowed me to give them friends and family that I was information. I became a teacher as gay and that is how I got HIV. well as a person they could see living with HIV. They really didn’t take it Diagnosis has helped me meet a well. Stigma is still an issue lot of people with different that we face today in perspectives; I get to meet people Macedonia. People need from all over the world. At first I was more education about HIV, a very narrow-minded person and I and to know that being gay saw things in black and white, but isn’t a bad thing. To fight meeting all these people has helped stigma we need to educate me to be more aware of the struggles people. that other people face. [Since diagnosis] I have Within our country the trend of learned that I am strong. I the epidemic is more concentrated feel like I now have a purpose now within key-affected populations in life and I try to help other and coming to this conference I have people going through what I been able to get lots of ideas of how did. From coming to the to help. Many people have died due conference I can see what my to psychosocial reasons and in PNG country can do to improve there is absolutely no focus or and to support people living Maura Elaripe Mea is one of PNG’s most prominent HIV activists support in this area. with HIV.
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Robert, 35 I discovered I was HIV positive when I went to enlist in the US military. I went through processing and found out after my medical examination. My family didn’t know about my status for a long time — at least five years — and actually, I never told them willingly. They found out because I was prosecuted for non-disclosure. Where I’m originally from, Louisiana, they have HIVspecific laws that criminalise non-disclosure and transmission of HIV. I was incarcerated for six months and had to register as a sex offender. In Louisiana, like most of the South in America, there is a lot of homophobia and the stigma surrounding HIV is very great — almost greater now than it’s ever been. And that stigma is enshrined in the law. But I’m an advocate now, and I talk about HIV criminalisation and awareness so that other people living with HIV can be aware of these To be able to come laws and also to show society how together and acknowledge negatively they our differences and affect people. These laws are similarities, and learn still something that even though we are that we are from different places, struggling against and trying to we all are fighting the appeal. Bringing same fight, makes you awareness and confident that we are speaking out has been a very not alone in this. positive experience, and I’m going to continue to do that because there is a need for people to see there are others just like them. To be able to come together [at conference] and acknowledge what our differences and similarities are, and just learning that even though we are from different places we all are fighting the same fight — that’s really supportive and encouraging and makes you confident that we are not alone in this. And that’s a comfort, knowing we’re not alone.
AIDS 2014
20th International AIDS Conference Melbourne, Australia July 20-25, 2014
l Older HIV-positive patients have a higher prevalence of depression, which contributes to an increased inflammatory response and less self-care.
Day 1
l Conference co-chairs Françoise barré-Sinoussi and Professor Sharon lewin opened proceedings and prepared delegates for the major focus of AIDS 2014: tackling the human rights violations around the world that are impeding the fight against HIV/AIDS. l Former High Court judge and AIDS campaigner Michael Kirby gave the keynote speech, stating that world leaders must understand the best way to get people tested and on treatment is not through laws that punish them, but rather initiatives that protect them. l The highlight for me was a powerful speech from a young Indonesian HIV-positive woman, Ayu Oktariani. “HIV cannot be solved by science alone — we must involve people living with HIV in the response,” she said.
Day 2
l As part of the conference focus on human rights, I’ve attended a number of sessions on HIV criminalisation. One of the most shocking cases came from Nick rhoades, an HIV-positive American gay guy convicted under an incredibly harsh law in Iowa in 2008. l Although a condom was used and Nick was on antiretrovirals with an undetectable viral load, he received a 25-year jail sentence for not disclosing his HIV status to a sexual partner. After going through an enormous emotional toll and considerable legal expenses, Nick was released after a year — but he lost his job because of the conviction and is still a registered sex offender. l responding to community advocacy in the lead-up to the conference, the Victorian government has said it will "amend" Section 19A of the Crimes Act. It is the only HIVspecific law in Australia that has a 25-year jail term for intentionally "trying to infect someone with an infectious disease".
Day 3
l Professor robert grant from the university of California in San Francisco presented further
Day 6
A delegate’s diary David Menadue reflects on key events and conference highlights results from the iPrEx study into the efficacy of Truvada as a preexposure prophylaxis (PrEP). The study found there were no infections in people who took Truvada at least four times a week (although people were encouraged to take it every day). l As well, there was no evidence that people increased numbers of sexual partners or reduced condom use as a result of taking the drug. There were also no toxicities reported with Truvada in the trial. used daily, it is estimated one in 200 might develop a mild kidney disturbance, but this was temporary. l Panel members spoke of stigma directed at people using PrEP as a prevention strategy. "Truvada whores" is a particularly unacceptable barb used against people who, it appears to me, are exercising an informed choice in their sexual behaviour.
Clinton’s global leadership in both raising awareness and providing practical assistance to save lives has been exceptional. l During his special address, Clinton exhorted African countries in particular to do more, saying 70% of new infections would be prevented if treatment and testing was done as well as it is in botswana.
Day 5
l I presented in the HIV and Ageing session, making the point that some of us who have lived with HIV for a long time have experienced multiple comorbidities. The way to deal with this effectively is to be literate
Day 4
l I make no apologies for being taken in by the star power of former uS president bill Clinton. Since 2002, the Clinton Health Access Initiative has provided hundreds of thousands of people with antiretrovirals (ArVs) and negotiated prices that have enabled access to ArVs for millions of people.
Former US president Bill Clinton: “star power”
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l The keynote speaker at the closing ceremony was antipoverty campaigner bob geldof. He targeted big Pharma for excessive prices, governments for reducing global funding for HIV, and world leaders for remaining indifferent about the huge loss of life under their rule. l The highlight for me though was a powerful speech from Melbourne HIV-positive man john Manwaring. He urged positive people to disclose where they were able and change the world and the course of the epidemic as a result.
about your conditions and treatments and to develop a close relationship with an experienced
“. . . Every day, those of us living with HIV have to contend with fear and the irrational, often John Manwaring: cruel, reactions it disclose and incites,” said change the world Manwaring. “But as I’ve heard people speak over this past week, I have realised an undeniable truth: we are more powerful than we know. When those of us living with HIV come out into the light and share our stories, we dispel the fear, the stigma, and the hate. In their eyes, we are no longer stereotypes and statistics: we doctor who can coordinate your are human.” care.
l latest research findings on ageing include: l Much of the inflammation that causes ageing co-morbidities can be traced to breaches in the gut mucosa that cannot be completely suppressed by combination antiretroviral therapy (cArT); l HIV-positive patients have a higher risk of low bone mineral density and fractures (particularly after 50 years). This is due to lifestyle factors, vitamin D deficiency, HIV inflammation and some cArT (particularly regimens containing tenofovir, although damage can be partly reversed by switching to raltegravir);
l There is much more that could be said about AIDS 2014: the good news about new hepatitis C and tuberculosis treatments; the rowdy ‘mobilisation march’ at which protesters were chanting ""HIV is not a crime"; the moving candlelight vigil; the vibrant global Village. l but for me, this was an International AIDS Conference defined by a greater community presence and a concentration on the urgent need to improve the human rights of people living with HIV around the world. Now it’s time to get down to work and step up the pace . . .
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Call for full repeal of 19A Living Positive Victoria and the Victorian AIDS Council identified action on HIV criminalisation as one area to focus on during the International AIDS Conference and in the lead-up to the 2014 state election. In particular, we targeted the repeal of section 19A of the Crimes Act as a priority area for action. Section 19A is Australia's only HIV-specific criminal offence. During the months leading up to the conference, Living Positive Victoria developed a strategy which included drafting a policy brief calling for repeal of section 19A; engaging with key contacts on both sides of politics; building a coalition of supporting civil society organisations; and using the conference as an opportunity to raise awareness of the issue of HIV criminalisation and the need for law reform. At a pre-conference event hosted by our organisations, the Victorian Health Minister, David Davis, announced that the state government would “amend section 19A” to make it nondiscriminatory. We welcomed this announcement but also expressed concerns about the wording and the lack of detail, and continued to press for full repeal. Several days later, the Victorian opposition confirmed that, if elected later this year, they would repeal section 19A and also deliver a range of other actions to ensure HIV is treated as a health issue, not a criminal justice one. Our organisations continue to work with the government to clarify their plans and will engage with the incoming government, regardless of the outcome of November's election, to ensure these promises are delivered, that section 19A is fully repealed, and that Victoria adopts world's best practice when it comes to HIV and the criminal law.
news LIVING POSITIVE VICTORIA livingpositivevictoria.org.au
Leadership program forms in Australia The Positive Leadership Development Institute (PLDI) began in Canada as a partnership of the Pacific AIDS Network and the Ontario AIDS Network. Australia is welcomed as an extension of this very successful program that focuses on increasing resilience and leadership capacity within the community of people living with HIV. Recently in Australia for AIDS 2014, Rick Kennedy from the Ontario AIDS Network said: “We are honoured to be entering into a partnership with our colleagues in Australia. They are leaders in fighting HIV stigma, and in advancing the principles of the greater involvement of people with HIV/AIDS.” The decision to form PLDI Australia took place after the group ran two very successful pilots in 2013. Participants go through an extensive and structured positive-peer-led evaluative program in a supported and open environment. Each workshop participant undergoes an
RICK KENNEDY WITH A PLACARD IN FEDERATION SQUARE
extensive series of pre- and post-workshop tests to gauge resilience and emotional intelligence levels and commits to six months of selfstructured leadership development assignments to further develop their skills and abilities. “We have already seen some fantastic results from PLDI Australia graduates
demonstrating the positive impact of the training on individual resilience levels and this is going to have a massive impact on our ability to build a stronger community of positive people,” said Positive Living Victoria executive officer Brent Allan. PLDI Australia will run nationally in partnership with PLHIV and AIDS organisations. The next training course is in October. If you’re interested in becoming involved email pldi@livingpostiivevictoria.org.au.
what’s on Are you in the loop?
Pollies debate
Upcoming
It is recognised that people who care for PLHIV are often silenced by the virus and this can make it harder for them to access support for themselves. In The Loop is a free one-and-a-half day workshop for carers, partners, friends and family of PLHIV. This therapeutic workshop aims to provide information about the support available in the community. It also seeks to explore the constraints that carers may experience and how they might overcome these. The next workshop is in the evening of Wednesday 15 October. For more information call Dimitri at Living Positive Victoria on (03) 9863 8744.
Prior to the AGM on Wednesday 15 October we’ll be having an exciting political debate between members of major parties about the joint election platform HIV/AIDS: What your government can do. See livingpositivevictoria.org.au/ announcements/vac-and-living-positivevictoria-announce-joint-electionplatform for more about the ten actions Living Positive Victoria and VAC would like to see from the elected government (venue TBA).
Planet Positive is a social afternoon for positive people and their friends and family. The spring Planet Positive will be held at DT’s, 164 Church Street, Richmond, on Saturday 4 October. Food, beverages and door prizes from 1pm. See you there!
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¢ More events check facebook.com/
livingpositivevictoria
Suite 1, 111 Coventry Street Southbank 3006 ) 03 9863 8733 ø livingpositivevictoria.org.au
NEWS
from the president JANE COSTELLO Welcome to the latest edition of Talkabout. The year just seems to have flown past; already we’re thinking of World AIDS Day in December. AIDS 2014 was a great opportunity to hear about the latest science on treatments and the continued research on vaccines. While there have been a number of research breakthroughs it was apparent given the complex nature of HIV that we still have many obstacles to overcome. What was particularly heartening to see was the number of HIV-positive people who presented at the conference. Positive Life NSW’s policy analyst Lance Feeney spoke on the cost of removing financial barriers to treatment uptake and adherence. In his presentation, Lance identified the factors contributing to financial stress for people living with HIV. Lance highlighted that through our advocacy work at Positive Life NSW we have been able to provide evidencebased research to government, demonstrating that the benefits of reducing the cost burden of antiretroviral medications makes good public and economic health sense. To view Lance’s speech, visit our website. The third phase of the Choose Campaign will focus on positive people’s active participation in decisionmaking about their treatments. I am pleased to announce that the campaign will be relaunched at Positive Life NSW’s World AIDS Day event on 1 December by the NSW Health Minister. Finally, there have been many remarkable people with and without HIV who have helped Positive Life NSW along its 25-year journey. It is their extraordinary contribution and commitment that has enabled Positive Life NSW to connect to community and to remain focused and responsive to the emerging needs of people living with and affected by HIV in NSW. We thank you.
PositiveLifeNSW
On the evening of 19 August 2014, staff, board, invited guests and friends gathered at the Grace Hotel in Sydney to pay respect, remember, acknowledge — and above all celebrate — the 25th anniversary of Positive Life NSW. What began as People Living with AIDS (NSW) grew out of a community meeting at the Trade Union Club, Sydney in September 1988. Activists and advocates faced with the awful reality of AIDS met with members of the medical community equally concerned about how the disease was impacting lives. It was a moment of crisis and activism. A month earlier, at the Third National Conference on AIDS in Hobart, a group of positive people got onto the stage and self-identified as HIV (pictured). They demanded greater representation and visibility. This brave act had an amazing and emotional impact on many people living with HIV (PLHIV) at that time. In the early days of People Living with AIDS (NSW) the focus was on gaining access to experimental HIV drugs such as AZT, and making sure there were dedicated AIDS wards available so as to prevent patients being left in hospital corridors. It was also a time when education and communication was paramount, as was supporting those with HIV and others affected by the disease. Towards the end of ’88, the first issue of the Talkabout newsletter was produced filling a much-needed information gap. Another milestone in our organisation’s history occurred in 1994 when the Positive Speakers’ Bureau (PSB) was formed. In an effort to break down barriers of Positive Life NSW is pleased to announce the release of the Positive Speakers’ Bureau DVD. It was launched at the G’Day Networking Lounge during the AIDS 2014 conference and features excerpts from ten passionate and experienced speakers. All speakers are trained in public speaking and receive regular supervision and support.
25 years of
activism, education and engagement
stigma, discrimination and media stereotypes, the PSB began its work talking to Australians about what it’s like to live with HIV. It is an initiative still in existence today (see below). In 1996 the introduction of
protease inhibitors in Australia — coined the ‘protease moment’ — gave positive people the first truly effective drug combinations to treat HIV. For the first time since 1984, it was about living with HIV rather than dying of AIDS.
PSB on DVD It is through hearing people’s lived experience and stories that we can help educate audiences, correct HIV myths and reduce stigma. It is through their own stories that speakers deliver valuable HIV education and
health promotion messages. Positive Life plans to use the DVD to promote the Positive Speakers’ Bureau to potential clients to give them a sense of
Around this time People Living with AIDS (NSW) played an active role in helping the positive community rebuild by helping PLHIV get back to work and develop new relationships. The organisation also provided information on how to manage the new drugs and their many side-effects; how to deal with stigma, discrimination and disclosure; how to negotiate sex, love and relationships; and how to protect partners from HIV. These days, much of the fear and anxiety around living with HIV is thankfully behind us. However, having moved to a place where HIV is a chronic manageable condition, PLHIV now have new and unexpected issues to deal with such as getting older — sometimes with a range of other health conditions; staying functional and independent; getting by financially; rebuilding friendship networks; and doing our bit to stop the transmission of HIV among the new generation. The fact that Positive Life NSW is still here 25 years on — we renamed in 2008 — speaks to the reality that PLHIV want to be empowered and to have peers advocate on their behalf. It speaks to the centrality and vitalness of people with HIV in the HIV response. We give thanks to the many remarkable people with and without HIV who have contributed to the work of our organisation. Positive Life NSW also acknowledges the many people lost to HIV/AIDS. Without them and their contributions the role of HIV activism, education and engagement would not have been possible. We raise a glass to celebrate their achievements. who the speakers are, the stories they’re likely to hear, and how this could benefit the audience or learning outcomes during the delivery of training. To find out more about the Positive Speakers’ Bureau DVD, please go to speakers.positivelife.org.au
PositiveLifeNSW 414 Elizabeth Street Surry Hills 2010 | ) (02) 9206 2177 or 1800 245 677 | ø positivelife.org.au PositiveLiving l 14 l SPrINg 2014