HIV and ageing: a changing epidemic

Volume 8 • Number 3 HIV Australia ISSN 1446-0319 Volume 8 No 3

Editors Finn O’Keefe and Linda Forbes

Treatments Editor Jason Appleby

Design + Production Ascending Horse www.ascendinghorse.com

Correspondence HIV Australia C/– AFAO, PO Box 51 Newtown NSW 2042 Australia Telephone +61 2 9557 9399 Facsimile +61 2 9557 9867 Email [email protected] Website www.afao.org.au

HIV Australia gratefully acknowledges the assistance of the Commonwealth Department of Health and Ageing

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AFAO’s aims are to: This edition of HIV Australia looks at people’s ■ Advocate on behalf of its members at the federal level, thereby providing the experiences of growing older with HIV HIV community with a national voice; and examines the synergies between HIV, ■ Stop the transmission of HIV by educating the community about HIV/AIDS, antiretrovirals and age-related conditions. especially those whose behaviour may place them at high risk; ■ Assist its members to provide material, emotional and social support to Cover: Old Boots by Guy Pascoe. people living with HIV; Guy Pascoe attended an art class facilitated by ■ Develop and formulate policy on HIV issues; Liz Brown in 2009 at the Positive Living Centre in ■ Collect and disseminate information for its members; South Yarra. He did not have a subject in mind, ■ Represent its members at national and international forums; and so took off his boots and painted them. Guy is ■ Promote medical, scientific and social research into HIV and its effects. currently completing a Bachelor of Fine Arts at AFAO Board NMIT. This image could be said to represent his Graham Brown President journey, and that of many others living with HIV, Vice President Linda Selvey who have suffered stigma, discrimination, grief, Secretary James Wilson and poverty – having travelled the long road and Treasurer Trish Langdon endured the hard journey with courage and dignity Ordinary Member Nic Parkhill Staff Representative Phillip Keen in the face of adversity. AIVL Jenny Kelsall — Lizzi Craig, Victorian AIDS Council (VAC)/ Anwernekenhe National Alliance Colin Ross Gay Men’s Health Centre. NAPWA Robert Mitchell Scarlet Alliance Kane Matthews

In recognising the fundamental importance of information and education in HIV Australia online includes additional working against the HIV epidemic, all written material in this publication may be content not published in the printed edition. reproduced free of charge, provided the following citation is made: “Reprinted from Volume 8 No 3 of HIV Australia, published by the Australian Federation of Read more of HIV Australia at AIDS Organisations”. Copyright of all images resides with the individual artists. www.afao.org.au

Views expressed in HIV Australia are those of the authors and do not necessarily reflect the views of AFAO or the Commonwealth Department of Health and Ageing.

AFAO is the peak non-government organisation representing Australia’s We want to hear what you think about community-based response to the HIV epidemic. AFAO’s members are the state HIV Australia. Please send your feedback to the Editor, and territory AIDS councils, the National Association of People Living [email protected] or write to us at: with HIV/AIDS, the Australian Injecting and Illicit Drug Users League, Scarlet HIV Australia Alliance and the Anwernekenhe National Alliance. C/– AFAO, PO Box 51, Newtown NSW 2042 Australia Volume 8, No. 3

Australian news 4 ‘We don’t have any of those people here … ’ 26 News from the Asia Pacific 5 JUDE COMFORT, RITA FREIJAH, BARBARA HORNER, ALEXANDRA McMANUS, GRAHAM LOVELOCK International news 6 and MICHELLE HUNTER outline unique research into Launch of the Michael Kirby Centre 7 accommodation and service needs of older for Public Health and Human Rights non-heterosexual populations in Australia MICHAEL WILLIAMS reports Thriving and surviving: ageing well with HIV 29 Antiretroviral (ARV)-based prevention 8 JAMES MAY interviews three people about their DEAN MURPHY provides an update on microbicides experiences living with HIV for over twenty years and treatments as prevention from the 2010 International New frontiers: exploring the psychosocial 32 AIDS Conference challenges of growing old with HIV ‘Nothing about us without us’: GLBTI older people 10 By ANTHONY LYONS, RACHEL KOELMEYER, and older people living with HIV – prospects, JEFFREY GRIERSON and MARIAN PITTS possibilities and self-determination Ready or not: addressing stigma and promoting 35 DR JO HARRISON advocates for the involvement of wellbeing of people living with HIV in aged-care older people from HIV-positive and GLBTI communities in By DR CATHERINE BARRETT, ASSOCIATE PROFESSOR responses to issues of HIV and ageing, and reflects on the ANNE MITCHELL, LIZZI CRAIG and DR LIZ CROCK community response to HIV Regional Snapshot: HIV in China 38 HAART and mind: HIV-cognitive impairment, 13 By ABIGAIL GROVES antiretroviral therapy and ageing PROF BRUCE J BREW examines the impact of HAART ‘Can you imagine a World AIDS Conference 41 and the ageing process on HIV-cognitive impairment without the Red Umbrellas?’ MICHAEL WILLIAMS alerts us to the implications Ageing and HIV – the story unfolds … 15 of discriminatory US travel restrictions for the ROSS DUFFIN discusses the latest chapter in the 2012 International AIDS conference story of HIV in Australia and his own experience of accelerated ageing Holy writ vs. legal right: reflections on the 42 Global Commission on HIV and the Law and A changing epidemic, a changing workforce: 18 religious ideologies implications of HIV and ageing for general practice JOHN GODWIN explores tensions between religious By CHRISTY NEWMAN, JOHN DE WIT, MICHAEL KIDD, ideologies and evidenced-based approaches to ROBERT REYNOLDS, PETER CANAVAN public health at a global level and SUSAN KIPPAX Book review: Dean Murphy reviews a collection 47 ART imitates life: the puzzle of HIV, ageing 20 of works from the social science field: and antiretroviral treatment HIV Treatment and Prevention Technologies in PROF JENNIFER HOY and DR OLGA VUJOVIC shed light International Perspective on the complex interplay between antiretroviral therapy and symptoms of chronic disease due to ageing or HIV Web Watch 48

Hearing our stories: community views on 23 Treatment briefs 49 ageing and HIV RUSSELL WESTACOTT highlights some of the key themes that emerged from a series of community forums on ageing and HIV HIV Australia welcomes submissions from interested authors. To submit an article or report for consideration, email [email protected]

HIV Australia Volume 8, No. 3 | 3 AUSTRALIAN NEWS services, and initiated a project looking at issues underpinning the provision of residential aged-care and service to lesbian, gay, bisexual, transsexual and AFAO welcomes Sydney intersex people. women to prevent cases of vertical HIV This work has now been recognised injecting centre certainty transmission. Infant male circumcision with an award – the Anita Villa nursing would be a comparable, albeit more home in Katoomba, run by the Riviera ccording to the Australian interventionist, population-wide Health group, winning the ‘strategy Federation of AIDS Organisations strategy’, they said. to promote the mental health and (AFAO),A best practice public health Australian Federation of AIDS wellbeing of residents with special policy has finally won out with the Organisations executive director announcement on 15 September that Don Baxter suggested caution on needs’ category in this year’s Positive the Medically Supervised Injecting circumcising male infants as a means Living in Aged Care Awards organised Centre in Sydney’s Kings Cross will be of preventing HIV: ‘There needs to by the Aged and Community Services made permanent. be thorough discussion about the Association of NSW and the ACT. AFAO Executive Director Don impacts and the value of moving in Riviera Health’s Dr Michele Baxter congratulated the NSW this direction, particularly in light of Chandler told Andrew M Potts of the Government on its decision. ‘This the nature of the epidemic in Australia Sydney Star Observer they were proud of decision by the NSW Government where it is overwhelmingly among winning the award: will save lives and is simply the logical, gay men and remains around seventy ‘A lot of providers in aged-care evidence based outcome from the percent so,’ Mr Baxter said. have a religious basis, so to get this mountain of medical evidence collected Mr Baxter said there was little acknowledged when it’s a taboo subject over nearly a decade … As a facility evidence to suggest circumcision did is really important … We were getting a for harm-minimisation and to prevent much to prevent HIV transmission lot of enquiries from people in same- the transmission of HIV the (centre) in gay men, though it was somewhat sex couples who were seeking aged-care has been an outstanding success. The protective against human papillomavirus and were quite frightened about what so-called ‘War on Drugs’ approach has (HPV). However, a vaccine was that might mean’, she said. clearly failed and it is time we moved to available for HPV which could be For Riviera Health, the changes treating drug use as primarily a health made available on the Pharmaceutical have been good for their bottom line. issue rather than primarily a criminal Benefits Scheme. ‘People are saying, “If they can look issue’, Mr Baxter said. In response to the MJA article, after the LGBT community and let Dr Gervase Chaney, a member of Circumcision call them be themselves, we can go there the Royal Australasian College of and be ourselves too”’, Chandler said. alls for a return to circumcision Physicians’ Committee for Paediatric as a standard practice would only Physician Training, told Sydney Star Blood donor policy review helpC prevent the spread of HIV among Observer that realities around HIV in heterosexual men, not gay men, reported Australia were very different to those in he Australian Red Cross Blood Andrew M Potts in the Sydney Star developing nations. Service has commissioned a Observer (Tuesday, 21 September 2010). ‘The College does not believe reviewT of current policies relating to Potts’ article was in response the African data can be directly the screening of potential blood donors to an article in the Medical Journal extrapolated to the Australian or New with regard to sexual activity. The review Zealand circumstance as HIV and of Australia (MJA) by St Vincent’s will consider deferral policies for men other sexually transmitted infections Hospital’s Dr Alex Wodak, National who have sex with men, including the have a much higher prevalence in Centre in HIV Epidemiology and questions potential donors are asked, Africa’, Dr Chaney said. Clinical Research Director David in the light of scientific evidence, and Dr Chaney said there were Cooper and Sydney University international practice. also ethical issues to consider when Molecular Medical Sciences Professor Organisations and members ‘clearly an infant is unable to consent of the public are invited to make Brian Morris, in which the benefits of to a procedure’, and that efforts to submissions to the Review Committee circumcision were discussed. educate heterosexuals about the risks addressing concerns and providing The authors noted in theMJA of HIV infection would produce suggestions regarding Blood Service article that data from developing better outcomes. nations where HIV was widespread deferral criteria relating to sexual showed circumcision reduced the risk Nursing home wins award for activity. The Review Committee will of males catching HIV from females, GLBT policies provide independent advice to the suggesting countries with far lower Blood Service. The details of the HIV rates could benefit too. ‘Being iviera Health, an Australian aged- review and submission process can be a low-prevalence country does not care provider, has been working in found at www.bloodrulesreview.com. preclude a population-wide approach conjunctionR with community groups to au. The deadline for submissions is 6 to HIV prevention … we test pregnant develop culturally appropriate care and November, 2010. 4 | HIV Australia Volume 8, No. 3 NEWS FROM THE ASIA PACIFIC

Crunch time for universal believes is required if universal access to group to be involved in a meaningful access to HIV treatment HIV treatment, care and support is to way’, he said. be achieved. As a result of the consultation, n the lead-up to the Global Fund’s further resources will be made available Voice of youth Third Voluntary Replenishment and to support MSM youth groups in the pledgingI conference in New York on 4– upported by UNAIDS and the region. The group will continue to share 5 October, the Asia Pacific Network of World AIDS Campaign, the Dutch experiences, and will reconvene in People Living with HIV (APN+) and NGOS Hivos organised the first Asian- 12 months. the Communities Delegation on the Pacific regional MSM and transgender Board of the Global Fund urged global Philippines to distribute and HIV Youth consultation in Bangkok leaders and donor countries to seize contraceptives in early September, with 40 young the critically important opportunity to MSM and transgender people from progress moves towards universal access he Philippine government ‘will 14 countries attending. to HIV treatment, care and support. provide contraceptives to poor Held over three days in Bangkok, Shiba Phurailatpam, Regional couplesT who request it, despite strong the group discussed key issues for opposition from the dominant Roman Coordinator of APN+, anticipated young people, including prevention, that the Global Fund meetings would Catholic church’ to which more than self-esteem, and access to relevant 80 percent of the country belongs, be critical to ensuring universal and appropriate services, information Agence France-Presse reported on access: ‘Global leaders need to step and education. A major focus was 26 September. up and demonstrate leadership and discussion of human rights abuses of President Aquino said during a accountability in ensuring HIV, young men who have sex with men visit to the United States last week: tuberculosis and malaria are addressed (MSM) and transgender people in ‘The government is obligated to inform through a innovative financing the region, and participants presented everybody of their responsibilities and mechanism that has produced country- recommendations for action to their choices. At the end of the day, led responses and in real partnerships international partners. government might provide assistance with civil society and affected ‘Young voices – and particularly to those who are without means if they populations … The view of civil society ours – have not been heard for the want to employ a particular method … across the Asia Pacific region is that the longest time in the AIDS response. Global Fund needs US$20 billion if real It is crucial we become empowered. I believe the couple will be in the best progress is to be made’, he said. Now we have a forum where young position to determine what is best for APN+ produced a video to MSM and transgender can really the family, how to space (the births), raise awareness of the need for contribute – this is very important’, what methods they can rely on and Global Fund to show practical said Hender Gercio, a student and HIV so forth.’ commitment – available at http://www. activist from the Philippines. Catholic Church representatives globalfundreplenishment.org. The video James Gray, Australian Youth have criticised Filipino President was released to coincide with public Ambassador for Development working Aquino’s support for contraception, demonstrations, press conferences and with the UNAIDS Regional Support the Associated Press (AP) reported others actions held across the African Team in Bangkok, also emphasised the on 28 September. The Reverend continent as well as the US, Canada, importance of young people finding Deogracias Yniguez of the Catholic Italy, Russia and other countries. voice and influence: ‘The consultation Bishops Conference of the Philippines Forceful advocacy by APN+ and represents a timely opportunity to told AP, ‘The whole church is against global community networks met with reflect on the struggle that many young it’. Presidential spokesman Edwin some success – donors meeting in MSM and transgender people face in Lacierda responded that ‘Aquino is New York pledging US $11.7 billion advocating for and taking control of willing to sit down with church officials to the Global Fund to Fight AIDS, their own health, particularly concerning to explain his position, which promotes Tuberculosis and Malaria for the years HIV and sexual health … This is an ‘responsible parenthood’, AP reported. 2011–2013 – but the commitment falls important step towards strengthening well short of the U$20 billion APN+ the response by creating a space for this

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HIV Australia Volume 8, No. 3 | 5 AIDS of UNICEF, is focussed on the INTERNATIONAL challenges ahead: ‘Every day, more than 1,000 infants acquire HIV … We know how to prevent this … intensified efforts NEWS are urgently needed to reach all mothers and children with the most effective treatment … ’, he said. Dr Paul De Lay, Deputy Executive Donors commit US$11.7 Baxter of the Australian Federation Director, Programme, UNAIDS, billion to the global fund for of AIDS Organisations (AFAO) pointed to the fundamental issue of next three years welcomed this announcement, but financing. ‘We’re on the right track, stressed that increases should not we’ve shown what works and now we onors meeting in New York stop: ‘The overall pledges by the richer need to do more of it … .’ have made a US $11.7 billion countries fall well short of the Global Russia’s escalating HIV financialD commitment to the Global Fund’s target of $20 billion and the epidemic Fund to Fight AIDS, Tuberculosis and $11.7 billion pledged will mean HIV Malaria for the years 2011–2013. The prevention and treatments programs will he Russian government has new funding compares with US$9.7 fall further behind the pace of the virus.’ announced a dramatic increase billion committed to the Global Fund Baxter said that that urgent healthcareT funding, reported Diana in Berlin in September 2007 for the interventions must be made to address Markosian in Rianovosti (27 September, period 2008–2010. rampant HIV and STI epidemics at en.rian.ru). However, although More than 40 countries, the amongst men who have sex with men Russia proposes to invest more than European Commission, faith-based living in Asia’s densely populated, poor $430 million in global healthcare before organisations, private foundations, and ‘mega-cities’. He noted that, although 2012, it is clear that not everyone corporations committed funding at the the current Australian Government is convinced of its commitment to pledging session in New York. AusAID HIV Strategy prioritises this Resources promised this month dealing with root causes of health concern, the current funding allocations issues, including those affecting HIV will enable already approved programs do not reflect this urgent priority. to continue and significantly expand prevention among injecting drug users. ‘We are calling on the government to their current efforts. In addition, at least Anya Sarang, president of the inject a further $30m over five years US$2.9 billion will be available for new Andrey Rylkov Foundation for into prevention and support programs commitments in the next three years. Health and Social Justice, is one of addressing sex between men in our near However, the total pledges fall short the doubters. Sarang points to Russia’s Asian neighbours’, Baxter said. of the estimated resources needed refusal to adopt ‘internationally proven’ to meet demand from developing Universal access to HIV/AIDS means of treating opiate addiction, such countries seeking to further scale up services a possibility? as methadone, in the belief that the their disease programs. West’s policy of supplying methadone ‘I deeply appreciate the efforts of ignificant progress has been made to addicts exacerbates the problem. It all the public and private donors who in several low and middle-income similarly disapproves of needle exchange with this replenishment have shown countriesS in increasing access to HIV programs, claiming that they are a tacit their continued confidence in the services, according to a new report, approval of the low level crime that Global Fund’, said Michel Kazatchkine, Towards universal access. The report funds users’ habits. the Executive Director of the Global – produced by WHO, the UNICEF According to Rianovosti, over the Fund. ‘However, we need to recognise and UNAIDS – is the fourth annual years NGOs have plugged enormous that this amount is not enough to report for tracking progress made in gaps that the Russian government has meet expected demand. It will lead achieving the 2010 target of providing failed to fill. A five-year grant provided to difficult decisions in the next three universal access to HIV prevention, by the Global Fund to Russian Health years that could slow down the effort to treatment and care. The report assessed Care Foundation expired at the end beat the three diseases. I will continue progress in 144 countries in 2009. of August last year, resulting in the a relentless effort to seek the additional WHO believes that progress in defunding of more than 40 prevention resources the Global Fund needs to Eastern and Southern Africa, the programs, most of them targeting fully contribute towards achieving the region most severely affected by HIV, injecting drug users. As this edition of Millennium Development Goals.’ offers hope; HIV treatment coverage HIV Australia was going to press, the Among the 40 donor countries at in the region increased from 32% to Global Fund had not approved new the New York meeting, the Australian 41% in 2009, with 53% of pregnant funding, claiming Russia is no longer Government announced a 55% women able to access HIV testing and eligible for HIV funding. increased commitment to the Fund, counselling in that year. Despite this totaling A$210m over three years. Don ‘hope’, Jimmy Kolker, Chief of HIV and

6 | HIV Australia Volume 8, No. 3 policies and interventions and is the first of its kind in Australia. Assertions that human rights are good for health need to be better founded, theorised and more rigorously translated into practice. While HIV is the paradigm disease which illustrates this link, due to its prevalence among vulnerable groups typically lacking rights, the Centre’s work is broader than HIV. The Centre’s Bebe Loff and Dr Deborah Zion were recently nominated for an Australia Museum Eureka Award for their work examining the ethical duties of health professionals caring for asylum seekers in detention. The Centre’s current projects include a four year study on how regulatory environments in Australia contribute to the obesity epidemic and what Launch of the reform to these structures might look like; a project on what Australians Michael Kirby Centre think about privacy in the conduct of health and medical research; and the creation of a legal service in Cambodia for Public Health and to improve the human rights and health of sex workers. It will soon Human Rights embark on a global mapping of laws and enforcement practices which affect By Michael Williams sex workers across 20 countries, and its researchers are engaged in theoretical studies on what constitutes ‘justice’ in TheMichael Kirby Centre for Public former sex worker and injecting the context of healthcare. The Centre Health and Human Rights – which drug user. Diane pointed to her own also undertakes law and ethics teaching sits within Monash University’s School experience to emphasise that ignorance to international health professionals. of Public Health and Preventive of human rights by state agencies can Although while the Centre is primarily Medicine – was officially launched on have catastrophic consequences for a research body, it also aims to Sunday 29 August 2010 by Michel vulnerable groups already at risk of incorporate its research into programs Sidibé (pictured above with Michael poor health outcomes. on the ground. Kirby), Executive Director of the Joint The Centre’s namesake, the Hon Impressed with its potential to United Nations Programme on HIV/ Michael Kirby AC CMG, spoke contribute to the mission of UNAIDS AIDS (UNAIDS). movingly about the history of HIV/ in articulating the link between The launch, held at the Positive AIDS and the auspicious appearance health and human rights, Mr Sidibé Living Centre in Melbourne, was on the global scene of the late proposed a formal memorandum of attended by over 250 people and Professor Jonathan Mann, a figure understanding between UNAIDS hosted by Bryan Dawe. It attracted widely credited with recognising and the Michael Kirby Centre to many distinguished guests from the the importance of human rights in work in partnership. judiciary, academia, medicine and responses to HIV. Kirby said that For further information about the non-government organisations. ‘it is that linkage which the [Centre] centre, visit http://www.med.monash. will seek to explore, chronicle and Mr Sidibé spoke about his deep edu.au/michael-kirby/ further’. He promised to maintain a admiration for Michael Kirby and the ‘close, ongoing relationship’ with the immense contribution he has made Michael Williams is a Research Fellow Centre going forward. over many years in combating HIV/ at the Michael Kirby Centre for AIDS. Speeches were also delivered The Michael Kirby Centre will critically Public Health and Human Rights. by the Centre’s Director, Associate examine the role that human rights Cheryl Overs is a Senior Research Professor Bebe Loff and Diane, a standards can play in public health Fellow at the same Centre.

HIV Australia Volume 8, No. 3 | 7 BIOMEDICAL PREVENTION UPDATE: XVIII INTERNATIONAL AIDS CONFERENCE VIENNA 2010

Antiretroviral (ARV)-based prevention By Dean Murphy

Microbicides positive finding, the study found that people on ARVs, the number of new The big news in biomedical prevention use of the gel reduced the risk of herpes HIV cases decreased by a factor of at the Vienna conference was the simplex virus 2 by 51% among women 0.97, or by 3%. For each 1 log decrease much-anticipated release of efficacy participating in the trial. in viral load, the number of newly diagnosed HIV cases decreased by a data from the CAPRISA 004 trial of There were no significant safety factor of 0.86. a vaginal microbicide, containing 1% concerns identified with the gel. tenofovir, among women in South The vast majority of the participants In the same session Geoffrey Garnett Africa. The results were announced (97.4%) found the gel acceptable. presented on a model that examined the with much fanfare and excitement at a Among the women who seroconverted potential impact of treatment initiation special conference session, despite the while using the gel, there were no at different CD4 levels (i.e. at either < fact that they had already been released changes in viral load and no 200 or < 350) on HIV transmission in by one media organisation a day earlier. tenofovir resistance. a generalised heterosexual epidemic. The study found tenofovir gel reduced The model also examined the potential ARV therapy as prevention HIV infections by 39%, a finding that is synergies of PrEP and ARVs for preventing HIV transmission.4 Results statistically significant. HIV incidence Despite the lack of any big announce- showed that, with good coverage of in the tenofovir gel arm was 5.6 per ments, ARV therapy as HIV prevention ARV therapy, 25% of new infections 100 person-years of study observation, was an important theme at Vienna, with could be averted if treatment is initiated compared with 9.1 per 100 person-years several sessions devoted to this topic. at CD4<200, and an additional 15% in the placebo gel arm (incidence rate 1 Julio Montaner argued that ARVs have of infections averted if treatment is ratio = 0.61; P = 0.017). There was a already demonstrated their efficacy initiated at CD4<350. Reductions trend towards higher effectiveness – a in HIV prevention, based on his in risk behaviour associated with 54% reduction – among women who analysis of data from British Colombia, treatment could improve this; increases reported higher adherence. (Women 2,3 Canada. Between 1996 and 2009, in risk behaviour could undermine it. were requested to insert one dose of gel the number of individuals receiving PrEP can reduce incidence but needs within 12 hours before sex, and a second combination ARVs increased from high efficacy, coverage and adherence dose of gel as soon as possible within 12 837 to 5413 – a significant increase – and needs appropriate targeting to hours after sex – with no more than two of 547%. During the same period, be efficient. That means for the same doses of gel in a 24-hour period.) the number of new HIV diagnoses number of people starting PrEP, Also, the HIV incidence rate in the fell from 702 to 338 per year, a 52% effective targeting to those at most tenofovir gel arm, when compared decrease. The overall correlation risk can substantially amplify impact. with the placebo gel arm, was 50% between the number of people on However, earlier initiation of ARV (P = 0.007) lower after the first 12 ARVs and the number of people newly therapy reduces the potential role of months of follow-up – which may testing HIV-positive per year was -0.89, PrEP; and PrEP’s effectiveness per indicate greater adherence in the first indicating a significant association partnership relative to treatment of the year of the study. In another very (P<0.0001). For every 100 additional infected partner determines how useful

8 | HIV Australia Volume 8, No. 3 it would be in discordant couples. At WHAT NEXT FOR MICROBICIDES? least 60% PrEP efficacy is needed for The VOICE Study (MTN-003) is evaluating the safety and effectiveness of two PrEP to avert more infections than ARV-based approaches for preventing sexual transmission of HIV in women, ARV therapy in serodiscordant couples. as well as determining whether these women are more likely to follow a Myron Cohen pointed out that regime of applying vaginal gel daily or taking an ARV tablet once a day. observational studies of treatment as The CHARM (Combination HIV Antiretroviral Rectal Microbicide) Program, among prevention in serodiscordant couples women and men who have sex with men (MSM), will test rectal gels containing have shown mixed results.5 Although tenofovir and a new ARV drug called UC781 (both separately and in combination) the findings have mostly been positive, for safety and efficacy. a recent Chinese study (Wang, JAIDS The MTN 017 trial is a Phase II, multi-site, open label crossover study of in press) has shown negative results adherence and pharmacokinetics of oral and rectal formulations of tenofovir with reported seroconversions being among 120 men in Thailand, Peru, and the US. This will possibly roll-over into evenly distributed among couples Phase IIB/III efficacy trial. in the treated and untreated arms.6 In addition, even in studies where ARVs have reduced the risk of HIV transmitted resistance, and dealing with much less promising when looking only transmission by up to 80%, the risk acute HIV infection. at men who have sex with men (MSM). of HIV transmission was not In an earlier conference plenary session, 7 Pre-exposure prophylaxis (PrEP) completely eliminated. Bernard Hirschel, one of the authors of Although we still await the results of Cohen provided a criticism of the Swiss Consensus Statement, argued efficacy trials of PrEP, Lisa Grohskopf mathematical models of ARVs for that ‘all things being equal’ the ten presented some 24-month results from prevention, and suggested that the years from 2000 to 2010 would have 9 the phase II study (CDC 4323) of results are predicted by the assumptions seen 50–100% more HIV infections. the biomedical and behavioural safety factored into such models. To However, the expansion of ARVs and study of tenofovir at one of the Vienna demonstrate this he provided examples better efficacy has decreased the pool of conference’s late-breaker sessions. This of seven published models. Those infectious people. He therefore posed study was conducted among 400 men with assumptions of high treatment the question: ‘what would happen if in Atlanta, Boston and San Francisco. coverage, adherence, and no increases more people were being treated?’. Participants were randomised to one of in risk behaviours showed positive To answer, Hirschel drew on Lima four study arms: two arms comprising results (with one exception), and and Montaner’s scenarios from British immediate daily tenofovir or placebo, those with assumptions of increased Colombia where they looked at various risk taking showed negative results. treatment coverage scenarios, and and two delayed tenofovir and placebo However, moving away from modelling concluded that the program would arms (which started nine-months studies, Cohen also showed how become cost effective in that province later). This design was to allow for ecological studies have provided after 2022, if all people with HIV were comparison between the risk behaviours 10 mixed results. Some studies, such as treated. Hirschel also examined the of participants in the immediate and the British Colombia study discussed design of the HPTN 052 study, looking delayed study arms. above (as well as other studies from at the effect of treating positive partners Overall, 86% of participants completed San Francisco and Denmark), have in serodiscordant couples immediately, all study visits. The conclusion was that suggested a positive effect of ARV versus waiting until CD4 levels reach tenofovir was safe and well-tolerated at therapy on HIV epidemics, whereas within or below the range of 200 and 24 months among HIV-negative men. studies from Amsterdam, France and 250 cells. He noted that based on data Sydney have shown no such effect. from the Swiss HIV Cohort Study, the effect of ARVs on transmission look continued on page 45 Cohen also examined what he referred to as the ‘inconvenient truths’ of transmission during acute and early infection, and the possibility of WHAT’S NEXT FOR ARV THERAPY AS PREVENTION? transmitted drug resistance. The latter The HPTN 052 study of 1763 discordant heterosexual couples in nine is seen, according to the published countries is due to report in 2013. This will determine the durability of ARVs model by Granich et al., at moderate preventing sexual transmission of HIV. 8 levels of adherence. Cohen’s conclusion The proposed HPTN 065 (also called TLC-Plus) will evaluate the feasibility was that ARVs have the power to of an enhanced community-level test, link to care, plus treatment strategy in the reduce onward transmission of HIV, United States. but the magnitude and durability is A proposed study will examine HIV incidence among serodiscordant gay unknown. The population benefit of male couples in Sydney and Melbourne to determine the impact of viral load ART will depend on the durability of on transmission. transmission suppression, preventing

HIV Australia Volume 8, No. 3 | 9 ‘Nothing about us without us’: GLBTI older people and older people living with HIV – prospects, possibilities and self-determination

By Dr Jo Harrison

The role of activism and the importance the community took in relation to HIV workers, injecting drug users and of self-determination by older people in Australia. Those directly impacted young people would never change themselves in relation to gay, lesbian, by the epidemic were integral to the their behaviours’.1 development of solutions to the crisis. bisexual, transgender and intersex Similarly, fear, scare-mongering and HIV/AIDS activists ensured that the (GLBTI) and HIV-related ageing negative stereotyping around ageing government response conquered fear cannot be underemphasised. As a can be combated by a community through policy development, research, growing body of evidence builds, and an approach which challenges notions education and advocacy. increasing number of projects develop that ageing itself is to be dreaded and to address this area of concern, it is Bill Bowtell has put it: denied. Older activists and their allies vitally important that the voices of older ‘We got on top of HIV/AIDS in the need to be resourced and enabled people themselves are central to the 1980s because we developed bold, to lead the way so that outcomes changes taking place. Older people need radical and effective new policies are consumer-driven and culturally to be in a position of self-determination, that worked. We believed and appropriate. The training of older so that they are involved as decision trusted the community to shape, people in activist and advocacy skills, makers and recognised as the experts on guide and implement the national including training faciliated by other their own situation and needs. In many HIV response. We did not take much older people with histories of activism respects, this mirrors the approach that notice of those who said gay men, sex around ageing, is an essential element

10 | HIV Australia Volume 8, No. 3 of a successful community driven services, particularly residential care. for the road that might lie ahead approach to ageing. The involvement Such fear and invisibility demand in addressing GLBTI and HIV- of older GLBTI people and people culturally competent responses from related ageing issues. The Same-Sex living with HIV as educators in service providers and government if Relationships (Equal Treatment in training programs has also proven to we are to break the cycle of invisibility Commonwealth Laws – General Law be highly effective in projects taking and silence. Reform) Act 2008 amended the Aged place overseas. The notion of a speakers’ Care Act 1997 so that same-sex couples It is not the case that GLBTI elderly bureau, well known in HIV-related would be given equity of treatment people have to ‘come out’, to receive education, needs to be made applicable when assessment for residential care sensitive services, or that this is the to educative processes in relation fees and charges takes place. The measure of a ‘successful service’. It is to aged-care. In this way, service willingness of ACE to commit to vital, however, that services strive to providers and others will gain an raising ageing issues at the national create safe environments and alleviate enhanced understanding of the level is to be commended. The paper fear across the aged-care sector. The experience of ageing from those has provided a basis for discussions NSW Department of Health and Aged that have taken place with government, with personal expertise. and Community Services Association including a meeting I attended in Doctoral research, which I conducted, NSW/ACT (ACS) Positive Living in February 2010 with the Office of the investigated activism around the lack Aged Care award was recently given to Minister for Ageing and the Office for of recognition of GLBTI issues in the ‘Safe Space at Our Place’ program an Ageing Australia. This was the first all areas of gerontology (aged-care), of Riviera Health, a NSW private sector time that a meeting to discuss GLBTI including government policy and residential aged-care provider. This ageing had taken place involving the programs in Australia and the USA. demonstrates that such an approach federal government and followed a The research revealed a serious lack can be incorporated into an aged-care period of extensive media coverage of attention to concerns related to environment to eliminate fear, enhance of GLBTI ageing issues in both sexuality and gender identity in the safety and celebrate diversity. mainstream and gay media, including Australian context. In the US context, This approach needs to be replicated matters raised with the Senate Inquiry a history of recognition of GLBTI across the sector, and the recent into Suicide in Australia. concerns at all levels of aged-care was federal funding of the ACON cultural The paper also provides an overview apparent and was related to a history awareness in aged-care education pilot of research and related initiatives, the of activism. This included an awareness project, to be conducted in partnership need for education and training, direct of the significance of ageing issues in with ACS, will enhance the process 2 service provision, advocacy and policy relation to HIV. of culturally appropriate education reform in the context of short, medium The deficit in Australian gerontology is being delivered by GLBTI and HIV 3 and long term options, ranging from reflected in an almost complete lack of organisations themselves. adapting the paperwork and forms mention of GLBTI and HIV-related The discussion paper that I co-authored used by Aged Care Assessment Teams ageing in aged-care policy, education with the Australian Coalition for to the formal recognition of GLBTI and training, research priorities, 4 Equality (ACE) examines the older people as a special needs group program guidelines and consumer implications of the legislative removal related initiatives, including advocacy. of same-sex discrimination for GLBTI This absence of attention to the special aged-care and provides some guideposts continued overleaf needs of GLBTI older people and their carers and advocates reinforces invisibility and avoids the need to address whether standards of care are culturally appropriate to GLBTI needs and the needs of those living with HIV. GLBTI consumers and people living GLBTI consumers and people living with HIV with HIV remain almost completely invisible within aged-care services remain almost completely invisible within aged- and across the aged-care sector. This invisibility is predominantly due to care services and across the aged-care sector. This lifetimes of fear of persecution and discrimination, as well as a current fear invisibility is predominantly due to lifetimes of fear of prejudice. Older people describe ‘de-gaying’ their homes for service of persecution and discrimination, as well as a providers and even contemplate suicide as an alternative to dependence on current fear of prejudice.

HIV Australia Volume 8, No. 3 | 11 continued from previous page and a National GLBTI Aged Care rights and entitlements. Without this great foresight. Most importantly, the Plan, which would include targeted process, the unfolding interest and voices of our own elders must be loudly funding programs. It includes an awareness around GLBTI ageing will heard at the forefront of change so that overview of developments taking place lack the bedrock provided by the voice diversity can be celebrated and fear of across Australia that relate to GLBTI of consumers that has driven gains in discrimination eradicated. ageing, including the research work of other areas of aged rights advocacy in References Australia. Those of us yet to experience the Matrix Guild in Victoria and the 1. Bowtell, B. (2010, 8 September). The HIV GLBTI Retirement Association in life as GLBTI older people, or older Prevention Revolution. City Voice, 11. WA, the Val’s Café Gay and Lesbian people living with HIV, will also lack 2. Harrison, J. (2004). Towards the Health Victoria (GLHV) aged- the insight that could be gained from Recognition of Gay Lesbian Bisexual fulfilling our roles as facilitators and Transgender and Intersex Ageing in care audit and training, the work of Australian Gerontology. PhD Thesis. Rainbow Visions in the Hunter region, enablers of self-determination. Faculty of Health Sciences. School of Health Sciences. University of South Riviera Health’s initiatives with staff, One of the messages that was the work of Lesbian and Gay Solidarity Australia. Available at: http://arrow.unisa. emphasised to me by experts and edu.au:8081/1959.8/24955 (accessed and long term ageing activists Kendall activists in the US and in Australia 18 September, 2010). Lovett and Mannie de Saxe, the work was the well-known social movement 3. Two articles from The Sydney Morning Herald report fears connected to aged of the Queensland Association for catch-phrase ‘nothing about us without Healthy Communities and its Ageing care and announce the funding to the us’. The work of driving change needs ACON pilot project: Action Group, the ageing work of the to be done by GLBTI and HIV Mahar, J. (2010, 17 April). Back into the National LGBT Health Alliance and organisations, and by empowered older closet: gays find few friends in aged care. Sydney Morning Herald. http://www. the launch of the Alzheimer’s Australia people. The ‘nothing about us without smh.com.au/national/back-into-the- paper Dementia: Lesbians and Gay Men us’ approach could be reflected in closet-gays-find-few-friendsin-aged- by Michael Kirby at an ACON, ACS the way that older people themselves care-20100416-skgc.html (accessed 18 and Alzheimer’s Australia event, and are part of delivering, guiding and September, 2010); and Mahar, J. (2010, 28 June). Federal grant similar events around Australia. enhancing the success of projects that to protect gays against stigma in aged The issues canvassed in the paper seek to educate and drive change. care. The Sydney Morning Herald. http:// are particularly pertinent given the www.smh.com.au/national/federal-grant- The GLBTI response to HIV/AIDS to-protect-gays-against-stigma-in-aged- impending federal control of all aged- was not to rush to develop residential care-20100627-zc2c.html (accessed 18 care matters and the need to ensure care facilities as a quick fix, and nor September, 2010). protection from discrimination to all should it be to ageing. Those who take 4. Harrison, J. and Irlam, C. B. (2010). The consumers of aged-care services. As removal of same-sex discrimination: action around ageing have much to Implications for lesbian, gay, bisexual, Senthorun Raj points out, federal anti- learn from the community response to transgender & intersex (LGBTI) aged care. discrimination legislation in relation HIV. As Christian Hart put it: Discussion Paper. Australian Coalition for to sexuality and gender identity is ‘We realized the importance of taking Equality and Diversity Futures, Adelaide. urgently needed so that consumers of http://www.coalitionforequality.org. care of our own. We expressed courage au/LGBTI-AgedCareDiscussionPaper.pdf aged-care services are protected from in the face of death. We achieved (accessed 18 September, 2010). discrimination and persecution in a success in creating a positive sense 5. Raj, S. (2010, 26 July). Same-sex couples sector which will be coming under of identity for those living with deserve a ‘fair go’ too. The Age. http:// www.theage.com.au/opinion/politics/ federal control.5 That the Discussion HIV. We created new organizations, samesex-couples-deserve-a-fair-go-too- 6 Paper of the current Productivity movements, and political armies’. 20100726-10s06.html (accessed 18 Commission Inquiry into Aged-care September, 2010). In similar fashion, as a community refers to ‘gays and lesbians’ in relation 6. Hart, C. (2009). Circuit Spirituality. Curcuit we will challenge negative stereotypes noize. http://www.noizemag.com/index. to ‘other groups with special needs’ is and stigma surrounding the process php/articles/explore_live/circuit_spirituality/ evidence that the issue warrants, and is of ageing. We will continue to seek (accessed 18 September, 2010). receiving, national attention. and attain the support of governments As GLBTI and HIV-related ageing that have yet to include us in policy or receives greater prominence at a programs in aged-care. Our response Dr Jo Harrison is a Fellow of the national level, it will be imperative to ageing will be unique, admirable, Australian Association of Gerontology that such change takes place in the somewhat shameless and inspiring to and is from the School of Health context of the empowerment of older others. This process will continue to Sciences at the University of South people themselves to speak on their take place in partnership with those Australia. She is also a partner with Diversity Futures consultants. own behalf and advocate for their own across the aged-care sector who possess

12 | HIV Australia Volume 8, No. 3 HAART and mind: HIV-cognitive impairment, antiretroviral therapy and ageing

By Prof Bruce J Brew

It was originally believed that Further studies have cast doubt on uncommon, while milder forms are the introduction of highly active this as the major explanation. It may frequent. This is reassuring, but it antiretroviral therapy (HAART) be true in some patients, but it cannot provides little comfort. Milder degrees would see the end of dementia and less be the main reason for the presence of HAND are still associated with severe forms of cognitive impairment in of HAND in HAART-treated job difficulties and sometimes job people living with HIV. Unfortunately, patients as cognitive impairment loss – not to mention problems with this is not the case. HIV still leads to has been shown to develop de novo in medication adherence. Thus there is cognitive impairment (also known approximately 25% of patients who a paradox: potent antiretroviral drugs as ‘HIV-associated neurocognitive were already taking HAART. Some work for severe cases of HAND, but disorders’, or HAND) in some patients, clinicians have dismissed this as merely do not seem to be effective against despite HAART. reflecting inadequate viral suppression mild impairment. in the blood. This isnot the case; the When early studies showed that in fact What is the explanation? Presently, development of HAND has been there had been no significant change the answer is unknown. Nonetheless, repeatedly shown to occur in patients in the frequency of HAND, most there are several possibilities. Patients who are virally suppressed. considered this was probably related to a with mild HAND symptoms may ‘legacy’ effect – in other words, patients What has changed with the delay seeking medical attention in the had been impaired and then started introduction of HAART is the severity belief that the mild symptoms they HAART but there was a degree of fixed of HAND. Fortunately, the severe or irreversible damage that remained. form, namely dementia, is now very continued overleaf

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experience are not of any consequence. subjects, who are otherwise well, have Thus the downside to the life- By the time medical intervention occurs, brain blood flow rates that are the prolonging effects of HAART is that however, there may already be a sizeable equivalent of people 15 years older. ageing and its associated effects appear degree of accumulated fixed damage. Furthermore, post mortem studies have to be accelerated, especially in relation This stands in contradistinction to more shown that HIV infected brains have to the brain. It is now up to researchers severe disease, which develops more raised concentrations of tau, a protein – with the help of the HIV positive quickly and where medical intervention associated with ageing, that again community – to better understand can be delivered more acutely. matches levels usually found in much this in order to improve the cognitive older people. Currently, it is not known health of people living with HIV. It is Other patients may develop HAND how HIV does this. a tall order. But so too was a treatment as a result of inadequate brain levels for HIV when it was first discussed of HAART, while some may develop HIV also seems to be able to accelerate more than 25 years ago. And look how impairment as a consequence of degenerative brain diseases. Among far we have come. HAART CNS toxicity, though the these is AD, or at least something evidence for this is still tenuous. akin to it. There are many lines of Selected reading evidence: common risk factors (insulin Perhaps the most important potential Brew, B., Crowe, S., Landay, A. Cysique, L., resistance, midlife raised cholesterol, Guillemin, G. (2009). Neurodegeneration and explanation is the possibility that genetic susceptibility status (APOE), ageing in the HAART era. J Neuroimmune some patients develop HAND as a Pharmacol, 4(2):163–74. an elevated subpopulation of white consequence of accelerated ageing. Ances, B., Sisti, D., Vaida, F., Liang, C., cells (CD69 monocytes), abnormal Certainly, there are increasing numbers Leontiev, O., Perthen, J. et al. On behalf of the cerebrospinal fluid levels of AD HNRC group. (2009). Resting cerebral blood of people becoming infected at an biomarkers in HIV, post mortem flow: a potential biomarker of the effects of HIV older age, as well as patients growing in the brain. Neurology,73(9):702–8. evidence of the some of the hallmarks old with HIV – including cases where Anthony, C., Ramage, S., Carnie, F., Simmonds of AD (amyloid plaques as well as people have been living with the virus P., Bell, J. (2006). Accelerated Tau deposition neurofibrillary tangles), an overlapping in the brains of individuals infected with human for over two decades. anatomic substrate (the ‘memory’ immunodeficiency virus-1 before and after the Ageing can impact the brain in two advent of highly active anti-retroviral therapy. part of the brain, the hippocampus), Acta Neuropathol, 111(6): 529–38. ways: the ageing process per se can and common causal pathways affect cognition, and along with ageing (inflammation, and disturbed cellular also comes the diseases of ageing – in waste disposal systems (ubiquitin- Professor Bruce Brew MBBS MD relation to the brain these are disorders proteosomal function, inhibition FRACP is Head of Neurology in the such as Alzheimer disease (AD). of autophagy). Department of Neurology at HIV seems to be able to both St Vincent’s Hospital in Sydney. HIV also causes a build up of amyloid, accelerate the ageing process and He has over 20 years experience in the sticky protein that is linked to brain clinical and basic science aspects of facilitate the development of some of disease in AD. Furthermore, HIV is the neurological complications of the diseases of ageing. associated with other degenerative HIV disease and has conducted What is the evidence for these brain diseases, such as Parkinson’s and numerous trials on HIV dementia processes as they pertain to the brain? motor neurone disease. How HIV and neuropathy. Recent studies of the blood flow to the ‘assists’ in the development of these Professor Bruce Brew, Paul Kidd brain have shown that HIV-positive conditions is still unclear. (National Association of People Living With HIV/Victorian AIDS Council) and Dr Edwina Wright (Alfred Hospital/Burnet Institute) discussed It is now up to researchers – with the help of the issues relating to HIV and ageing recently with Radio National’s Natasha HIV-positive community – to better understand this Mitchell, as part of an episode of the ABC science program All in the Mind. in order to improve the cognitive health of people Links to audio from this broadcast are available in the digital edition of HIV living with HIV. Australia at www.afao.org.au

14 | HIV Australia Volume 8, No. 3 Ageing and HIV – the story unfolds …

By Ross Duffin

Since around 2006, the story about the process for people with HIV has combination treatments first became impact of long term living with HIV huge implications. It may be the case available, less than 15% of people living on the ageing process has gradually that looking after organ systems that with HIV were aged over 50. Now, over begun to be told. There’s a lot more to are susceptible to accelerated ageing one in three HIV-positive people is be known but it is clear that something becomes as important as HIV treatments over 50, and by the end of this decade is going on: the ageing process is in determining how well you are as you over 50% will be. We are replacing accelerated in people with HIV. get older. the epidemic in people under 40 (let’s not forget this), and we have, by and This story hasn’t yet been communicated Ageing was never a discussion we large, a relatively new older epidemic to people living with HIV – partly thought we’d have in relation to living – an epidemic that will be increasingly because of uncertainty, partly because with HIV. Even without the news affected by accelerated ageing. there’s a lot more to learn. The time about accelerated ageing, the changing has come to start communicating age profile of the HIV population is because the acceleration of the ageing a big story in itself. In 1996, when continued overleaf

HIV Australia Volume 8, No. 3 | 15 continued from previous page

There has been a much longer circles, discussions about lesbian and identity is not an issue once you are old discussion about ageing in the gay gay male ageing were more common. enough for aged-care. A lot of the next and lesbian community. When I first Lesbians and gay men no longer all generation of lesbians and gay men are came out in the 1970s, openly gay men seemed young. After all, it was almost not prepared to be silent about their seemed very young. It was, after all, a thirty years since the beginning of the sexual identity. It would be useful for young movement. Ageing was either lesbian and gay movement in Australia. addressing HIV ageing if the ageing something we didn’t talk about, or was issues relevant to those groups most For gay men with HIV the world frowned on as a place we didn’t want affected by HIV were addressed in looked different. By 1996 when to get to. By the early 1980s, the gay parallel – and that people with HIV effective treatments arrived, there movement had expanded and we’d were not expected to be the battering were very few older people with HIV begun to talk about ageing a little rams of social change in their – effectively a generation of gay men bit. The arrival of HIV stopped that aged-care service. had already died from AIDS. There was conversation. When I found out I was no HIV and ageing story because there There are a number of important HIV-positive I didn’t expect to see the were very few older people with HIV. reasons why we need to address HIV turn of the century. Who now cared and accelerated ageing before we are about ageing? And now overwhelmed by its impact. There is a common belief that we already have The 90s was a decade of two halves. The Now, 14 years or so later, we do have an a large population of people with first half was dominated by AIDS – a older generation of people with HIV. disappearing four letter word in this HIV in their 50s and the services country. “Sydeney” won the Olympics. There have been attempts to collapse are coping fine. This is not so. At the In 1996, the arrival of combination HIV ageing and gay and lesbian ageing moment most HIV-positive people in into one issue. Of course there are therapy was announced; we wondered Australia experiencing co-morbidities overlaps but accelerated ageing makes how long it would last – but we thought (conditions that occur commonly when ‘HIV ageing’ quite distinct – and over we’d get to the Olympics and a new you have long term HIV infections), 20% of people living with HIV are not century. We went from living life are in their 50s and attempting to gay. Because appropriate care for ageing in the fast lane, to getting older and manage conditions that usually don’t people with HIV is characterised as wondering how long these treatments occur frequently until people are in a health issue, strategies to address would keep us alive. We now know their 70s. These co-morbidities are aged-care issues for people with HIV – they’ve kept most of us alive … mostly progressive. Chances are we’ll are already underway. The issues of gay face much more serious illness by the From the late 90s, the broader gay and lesbian ageing are still frequently time we make it to our late 50s. community was less and less defined not addressed in an aged-care sector It used to be you went to your HIV by HIV – and outside HIV-positive that often tries to tell us that sexual doctor for a 15 minute consultation on your HIV treatments. It’s often the case now if you are over fifty that the HIV treatments discussion has become At the moment most HIV-positive people routine and can be dealt with quickly. But for those of us with a number of in Australia experiencing co-morbidities … are in co-morbidities, it seems like we never get enough time with our doctors their 50s and attempting to manage conditions – and the amount we are expecting our doctors to deal with and know about that usually don’t occur frequently until is ever increasing. HIV doctors are now expected to not only specialise in people are in their 70s. These co-morbidities are treatments and side-effects, but also to have somehow morphed into quasi- mostly progressive. Chances are we’ll face much gerontologists specialising in HIV. If Medicare and the health system had more serious illness by the time we make it to our trouble adapting to ‘HIV specialist GPs’ it will have even more trouble with late fifties. ‘HIV specialist GPs and gerontologists’.

16 | HIV Australia Volume 8, No. 3 At the moment there are over 1000 in their homes or other appropriate some of my tendency for depression. If new diagnoses of HIV infection every accommodation. The main issue is I am to face a number of years like this year in Australia. The death rate of whether there is the volume of services then it’s not exactly a prospect that I people with HIV from all causes is to cope with what’s coming. look forward to. I retired from HIV- much less – probably under 300 per related work in a vain attempt to find There is also a major issue with being year. Treatments have kept us alive and a place where instead of living inside able to continue to work, or the need our survival means that there are ever HIV, I could live beside HIV. But for to go to less-demanding jobs. Many increasing numbers of people living people who have long term HIV the first generation of people with HIV with HIV – about double the number infection may face increasing frailty as it seems there is no escape. there were in 1996, when improved early as in their late 40s (depending on For the next generation the information treatments arrived. Although some of when they first became HIV-positive). on ageing means that people living with that increase can be explained by rising Reduced work capacity caused by HIV will have to tune into HIV more infection rates (especially in people people with frailty due to chronic often – and learn about preventative over 40), it is by and large due to a ill-health has not been recognised health for their futures. For me, I’m generation of people now living close by policy-makers tweaking DSP and sort of bizarrely happy being a cranky to a normal life expectancy. age pension rules. Inflexible eligibility old queer (COQ) – annoyed that once The future criteria for DSP can result in frail again HIV has bitten us and it seems HIV-positive people struggling on like there is a third phase of HIV illness It is anticipated that over the next Newstart when they should be on that has yet to be fully understood decade the death rate of people with pension. This issue will be compounded and explained. HIV will gradually approach the as the retirement age and minimum age infection rate – and be even higher for access to age pension increases. than it was in the peak death years from 1990 to 1996. But unlike the What it all means for this cranky 1990s, this will not be an epidemic old queer … of deaths among people in their 20s, For me it’s not dying I fear – it’s getting 30s and 40s – it will be mainly deaths there. This was exemplified for me in people over 50. The issue caused this year when I had a stroke, which by accelerated ageing is the increased has played havoc with my short term Ross Duffin has been involved in the number and severity of co-morbidities memory – my ability to remember HIV sector for over 25 years. He has experienced by HIV-positive people. words, people’s names, and memories been retired for a number of years People living with HIV are more prone of what happened in the last decade. It and suffers from accelerated ageing to a number of serious illnesses, periods wasn’t all bad – it seems to have zapped and crankiness. of hospitalisation become more likely, and the whole process becomes more expensive to manage. Case-mix funding is on the way. It is sometimes the case that conditions The issue caused by accelerated ageing is the perceived as ‘expensive’ do badly under case-mix, and indeed it is almost increased number and severity of co-morbidities certain the medical costs of looking after older people with HIV will be experienced by HIV-positive people. People living underestimated because we don’t yet have the data. with HIV are more prone to a number of serious The other issue that will be affected by illnesses, periods of hospitalisation become more the huge increase in people with HIV over 50 is appropriate accommodation and aged-care services. The discussion likely, and the whole process becomes more is often dominated by aged-care (as it is the thing most feared by my peers) expensive to manage. – but there’s a range of strategies and services designed to keep people

HIV Australia Volume 8, No. 3 | 17 A changing epidemic, a changing workforce: implications of HIV and ageing for general practice

By Christy Newman, John de Wit, Michael Kidd, Robert Reynolds, Peter Canavan and Susan Kippax

‘HIV and ageing’ affects general medical care and advice for the growing HIV/AIDS, the Australasian Society practice in two fundamental ways. number of people living with HIV for HIV Medicine, the Australian The first is that as people with HIV may be insufficient to replace those Federation of AIDS Organisations get older their health needs change – retiring, reducing their working hours and the Royal Australian College of affecting the kind of primary care they or changing their roles. General Practitioners. require. The second is that the general To explore these issues, the National Ageing of the patient cohort practice workforce which supports Centre in HIV Social Research at people with HIV in Australia is itself The first stage of the research involved The University of New South Wales getting older, with a considerable interviewing 24 key informants in is leading a three-year study funded number of doctors who have been senior policy, advocacy and education by the National Health and Medical providing HIV primary care for many roles in all states and territories, to Research Council. The study will identify the primary issues affecting years now heading toward retirement. provide evidence about why and the HIV general practice workforce A concern that recurs in policy debates how general practitioners pursue a in Australia. Participants included on HIV clinical care in Australia is that special interest in HIV medicine. The 17 men and seven women from a the number of general practitioners research is guided by representatives range of professional backgrounds (GPs) training as HIV antiretroviral from Flinders University, the National including medicine, allied health, (s100) prescribers and able to provide Association of People Living with public service and community advocacy.

18 | HIV Australia Volume 8, No. 3 Five participants self-disclosed as to interview current HIV s100 experience the emotional and political HIV-positive. prescribers, GPs and other clinicians intensity of the first decade of the who once worked in HIV but have epidemic, or perhaps because the A central observation made by these retired or moved into new areas, other politics of sexual identity have also interviewees was that HIV care needs members of general practice teams who been changing since that time. are likely to change considerably currently provide HIV care, and GP over the coming years as the current This study represents a unique registrars with an interest in HIV. cohort of people living with HIV gets collaboration between HIV social older, and given that the age at which TheSixth National HIV Strategy (2010– researchers, general practice researchers, Australians are being diagnosed with 2013) recognises these issues, noting partner organisations from the HIV HIV is rising. In addition, the potential ‘recruitment and retention difficulties and general practice sectors and ‘accelerated ageing’ of people living for Section100 GP prescribers and general practitioners. In particular, with HIV was identified as a concern clinicians with an interest in HIV’. including a consumer advocate on our in terms of bringing forward in time Addressing these factors will be core research team demonstrates the many of the health issues associated challenging given the national health partnership that has been formed across with ageing. workforce shortage and the growing our interdisciplinary team in order to pressures on both specialist and genuinely represent the different voices In combination, these issues were primary care funding in Australia. Our of research, advocacy, policy and described as posing serious challenges study will provide critical evidence for clinical practice. to our nation’s capacity to continue how best to support GPs to continue to provide quality primary care for This partnership will ensure that the to provide ongoing care for people HIV-positive people into the future. outcomes of this study have a direct living with HIV in different parts of The focus therefore becomes how this impact on our nation’s policy and Australia. Of particular interest will be perceived shift in the nature of HIV advocacy response to HIV, through the experiences of GPs who have been care will impact on whether GPs and the committed involvement of the treating HIV-positive patients for other members of general practice peak organisations that have various lengths of time, with different teams decide to commence or continue responsibility for representing PLHIV HIV caseloads and in both urban and working in this field. and the members of the general regional settings. practice workforce who provide Workforce attrition and A changing epidemic; a changing HIV care in Australia. attraction workforce For more information or to take This brings us to the second area in One issue that may be of interest part in a clinician interview, which ‘ageing’ is seen to affect the please contact Christy Newman at general practice workforce in Australia, here is the belief held by some people [email protected] including HIV antiretroviral (s100) that many of the GPs who have prescriber GPs. As with many other worked in the field since the 1980s professional groups in Australia and have done so because of a sense of in other developed nations, many socio-political duty to the communities Dr Christy Newman is a Senior Australian GPs are planning to retire most affected by HIV, notably that Research Fellow at the National within the next decade, and many of gay men. It may be that younger Centre in HIV Social Research at The University of New South Wales and others plan to reduce their clinic hours or more recently trained GPs will the primary researcher on the HIV or change their area of work. This has have different motivations, perhaps General Practice Workforce Project. particular implications for the provision because many did not directly of HIV care because of the significant role that many GPs have played in the provision of HIV care in Australia since the start of the epidemic. The focus therefore becomes how this perceived Our key informant interviews suggested that ‘ageing’ issues are shift in the nature of HIV care will impact on becoming central to the recruitment and support needs of the HIV general whether GPs and other members of general practice workforce in Australia. The next phase of our study comprises practice teams decide to commence or continue interviews with clinicians to explore this and related issues. We are hoping working in this field.

HIV Australia Volume 8, No. 3 | 19 ART imitates life: the puzzle of HIV, ageing and antiretroviral treatment

By Prof Jennifer Hoy and Dr Olga Vujovic

The benefits of antiretroviral therapy It also showed that these complications related diseases and HIV-related non- in prevention of progression of HIV are more common at lower CD4 cell AIDS complications have not been to AIDS – and thereby in improving counts.1 We learnt from this study that compared with the risks of ART, which survival of people living with HIV is NOT smart to stop ART. include immediate adverse effects, – have been known for 15 years. risk of development of resistance and The unexpected findings from the limitation of future treatment options, The SMART study, which compared SMART study also influenced many as well as long term toxicity for people continuous antiretroviral treatment treatment guidelines, with some with high CD4 cell counts – a risk (ART) keeping the viral load as low as extrapolating the findings to mean that especially important for older HIV- possible with intermittent treatment ART should be commenced as soon positive people. used only when the CD4 cell count as HIV infection is diagnosed. Such An ageing cohort dropped below 250 cells, was pivotal in guidelines are contentious; the clinical enhancing understanding of the effects trial evidence for starting treatment In the last two years, approximately of adherence to ART. It showed that below 350 CD4 cells is clear but there 30% of all new HIV diagnoses in ART not only prevents HIV-related is a lack of good quality data to support Australia have occurred in individuals opportunistic infections, but also many the commencement of treatment at aged 50 years and over, and it is non-AIDS complications such as heart CD4 cell counts above 500 cells. The anticipated that 50% of those living disease, cancer, kidney and liver disease. benefits of preventing the AIDS- with HIV in 2015 will be over the age

20 | HIV Australia Volume 8, No. 3 of 50 years.2 In Victoria, those over the infarction, with the relative risk per in response to ART. This was observed age of 50 are seven times more likely additional year of protease inhibitor with protease inhibitor based ART. to be diagnosed with HIV when their greater than the risk per additional Older individuals are also less likely CD4 cell count is less than 200 cells year of age.5 The risk varies according to develop virological breakthrough or when they have an AIDS illness.3 to different protease inhibitors, and or treatment failure, which is most Studies have reported a 50% increased the mechanism by which these drugs likely related to better adherence to risk of clinical disease progression and cause increased cardiovascular disease treatment.10,11 poorer survival in those aged over 50, is thought to be the changes in blood The clinical consequences of incomplete despite initiation of combination ART.4 cholesterol and triglycerides caused by immune recovery include the serious This greater prevalence of co-morbid these drugs.6 The current use of abacavir non-AIDS illnesses (greater rates of conditions normally associated with has also been associated with an cardiovascular disease, liver disease, ageing is largely responsible for the increased risk of myocardial infarction, kidney disease, bone disease and greater mortality observed in the older although the causative mechanism is fractures, neurocognitive impairment, HIV-positive person. not yet understood.7 cancer) in addition to HIV-related Although the recommendations Older individuals initiating ART opportunistic infections. for when to initiate ART do not are less likely to restore their immune Antiretroviral treatment tolerability differ for older adults with HIV system. Despite successful treatment may decrease with age. A study from a infection, the choice of ART needs with ART and achieving sustained large American healthcare provider has to be individualised with respect to virological suppression, people over shown that older HIV-positive people pre-existing disease. The potential the age of 50 years have slower rates have greater toxicity to ART compared impacts of the recent trend towards of CD4 cell recovery and smaller to their younger counterparts. Older earlier antiretroviral treatment given an CD4 cell increases. The average patients (over 50 years of age) were older HIV-positive population require monthly CD4 cell increase for the first more likely to develop significant careful consideration. six months after initiation of ART is laboratory abnormalities after starting significantly lower for older adults Management of HIV is complicated ART, including metabolic (increased (37 cells/month versus 42 cells/month by the presence of co-morbidites glucose, cholesterol, and triglycerides), in those less than 50 years), and the less such as hypertension, metabolic hematologic (white cell count and disorders such as diabetes, insulin robust and delayed CD4 cell recovery 8 haemoglobin) and renal (creatinine) was maintained from 6 to 12 months. 12 resistance and hyperlipidemia, liver dysfunction. Another study made These differences may persist for at disease, renal impairment, bone disease, the observation that older patients least five years. Other studies have neurocognitive impairment and cancer. have higher levels of blood glucose, shown no differences in the CD4 Co-morbidities already experienced cholesterol, triglycerides and creatinine cell increases between older and by older HIV-positive people need prior to commencing ART, so that younger patients.9 to be taken into account as potential similar magnitudes of increase in these short- and long-term toxicity may On a more positive note, it has been metabolic markers in the old and the have great impact on the older observed that older HIV-positive young places the older HIV-positive HIV-positive individual. people are more likely to achieve The example of cardiovascular disease complete virological suppression and underscores the complexity of the achieve virological suppression faster continued overleaf relationship between HIV infection, ageing and ART. Observational studies and randomised trials have Older individuals initiating ART are less likely to clearly reported an increased risk of cardiovascular disease among people with HIV – a risk that is greater for restore their immune system. Despite successful older patients and those with lower CD4 cell counts. But observational treatment with ART and achieving sustained studies have also reported increased rates of myocardial infarction (heart virological suppression, people over the age of attack) with specific antiretroviral drugs. Protease inhibitor containing 50 years have slower rates of CD4 cell recovery regimens were the first to be shown to be associated with increased myocardial and smaller CD4 cell increases.

HIV Australia Volume 8, No. 3 | 21 continued from previous page

4. Grabar S., Weiss L., Costagliola D. person at greater risk of diabetes, more than monitoring HIV viral load (2006). HIV infection in older patients in metabolic syndrome, hypertension, and CD4 cell counts – it requires the HAART era. Journal of Antimicrobial hyperlipidemia and cardiovascular consideration of the long term side Chemotherapy, 57(1):4–7. disease.13 effects of ART that affect cardiovascular 5. Group DADS, Friis-Moller, N., Reiss, P., Sabin, C., Weber, R., Monforte AdA, et risk, metabolic disease and diabetes, The ART drugs and medication al. (2007). Class of antiretroviral drugs renal disease and bone health, and and the risk of myocardial infarction. used to treat other co-morbidites modifying ART in response to these New England Journal of Medicine, may have drug-drug interactions, co-morbidities. HIV management in 26;356(17):1723–35. which complicate their use. The risks 6. Worm, S., Sabin, C., Weber, R., Reiss, P., older patients is complicated by the of unrecognised drug interactions El-Sadr, W., Dabis, F., et al. (2010). Risk presence of co-morbidities; both HIV of myocardial infarction in patients include HIV treatment failure and and ART itself may contribute to the with HIV infection exposed to specific development of resistance if ART drug individual antiretroviral drugs from the co-morbidities, which themselves have concentrations are lowered by other 3 major drug classes: the data collection an important bearing on the selection of medication, OR increased adverse on adverse events of anti-HIV drugs ART regimen. (D:A:D) study. Journal of Infectious effects or overlapping toxicity of the Diseases, 201(3):318–30. ART drugs and the other medication. In order to achieve the best possible 7. Group DADS, Sabin, C., Worm, S., Older individuals are likely to be on health outcomes for older people Weber, R., Reiss, P., El-Sadr, W., et al. multiple medications for co-morbidities living with HIV, continual assessment Use of nucleoside reverse transcriptase inhibitors and risk of myocardial such as hypertension, high cholesterol and active interventions are required infarction in HIV-infected patients and diabetes, and polypharmacy may be for HIV therapy and co-morbid enrolled in the D:A:D study: a multi- difficult to manage. Dose adjustments conditions. In the current era, cohort collaboration.[Erratum appears in Lancet. 2008, 372(9635):292]. Lancet, may be required as new medications co-morbid conditions are responsible 371(9622):1417–26. are started, with adjustments to the for an increasing burden of illness. 8. Grabar, S., Kousignian, I., Sobel, A., number of pills taken and frequency Le Bras, P., Gasnault, J., Enel, P., et A robust approach includes patient of dosing each day – some after meals, al. (2004). Immunologic and clinical education, prevention strategies (e.g. responses to highly active antiretroviral some before meals, some before sleep. smoking cessation), in addition to therapy over 50 years of age. Results from This makes adherence complicated. the French Hospital Database on HIV. aggressive management of established However, although the likelihood of AIDS, 18(15):2029–38. disease such as hypertension and 9. Greenbaum, A., Wilson, L., Keruly, J., poor adherence to treatment generally hyperlipidaemia. A strong partnership Moore, R., Gebo, K. (2008). Effect of age increases with increasing pill burden approach between HIV-treating and HAART regimen on clinical response and number of doses required each day, in an urban cohort of HIV-infected doctors and primary health care studies have shown that adherence is individuals. AIDS, 22(17):2331–9. providers, underpinned by skilled 10. Ibid. superior in those aged over 50 years.14 nursing interventions, has been 11. Silverberg, M., Leyden, W., Horberg, M., The latest hypotheses generated to demonstrated to be an effective model DeLorenze, G., Klein, D., Quesenberry, C., Jr. (2007). Older age and the response explain the worse outcome for people of chronic disease management in other to and tolerability of antiretroviral therapy. with HIV infection on ART compared arenas and thus should be similarly Archives of Internal Medicine, 167(7): with the general population of the effective for management of chronic 684–91. 12. Ibid. same age suggest that despite HIV disease in the context of HIV infection. 13. Orlando, G., Meraviglia, P., Cordier, L., viral load levels below 50 copies/ml on Meroni, L., Landonio, S., Giorgi, R., et References ART, there is sufficient low level viral al. (2006). Antiretroviral treatment and replication to induce persistent immune 1. El-Sadr, W., Lundgren J., Neaton J., age-related comorbidities in a cohort of older HIV-infected patients. HIV Medicine, activation. This persistent immune Gordin F., Abrams D., et al. (2006). Strategies for Management of Antiretroviral 7(8):549–57. activation leads to ‘immune exhaustion’ Therapy Study G, CD4+ count-guided 14. Silverberg, et al., op. cit. and the immune decline similar to that interruption of antiretroviral treatment. New seen in healthy ageing. This immune England Journal of Medicine, 355(22): Prof Jennifer Hoy is Professor 2283–96. Director of HIV Medicine and Head of senescence means there is a reduction 2. Murray, J., McDonald, A., Law, M. (2009). the Victorian HIV Service, Infectious in immune surveillance and increased Rapidly ageing HIV epidemic among Diseases Unit, The Alfred Hospital disease, e.g. cancer, infections. men who have sex with men in Australia. Sexual Health, 6(1):83–6. and Monash University, Melbourne. Monitoring of side-effects 3. Lemoh, C., Guy, R., Yohannes, K., Lewis, Dr Olga Vujovic is an Infectious essential J., Street, A., Biggs, B., et al. (2009). Delayed diagnosis of HIV infection in Diseases Physician and Head of the The routine monitoring of older Victoria 1994 to 2006. Sexual Health, Victorian HIV Consultancy, Infectious HIV-positive people on ART involves 6(2):117–22. Diseases Unit, The Alfred Hospital.

22 | HIV Australia Volume 8, No. 3 Hearing our stories: community views on ageing and HIV

By Russell Westacott

Over the last couple of years ACON While the forums were open to both moderated by an external facilitator. In has placed GLBT ageing issues on men and women – straight and gay no way does this article cover all of the the agenda of its three-year strategic – only gay men attended; most of the territory that our participants discussed, plan. In 2006/7 ACON released the participants were in their late 40s, 50s rather, I have focused on six key themes Ageing Disgracefully report, available and 60s. that emerged out of the forums. for download on the ACON website The forums were offered for the purpose Rapid progression of ageing (www.acon.org). of hearing the stories of people living We know from a range of different data To better understand the psycho-social with HIV who now find themselves that HIV can bring about the early issues of HIV and ageing, ACON growing older – to gain insight into onset of a range of chronic health issues has held three community forums on the lived experience of being positive often associated with ageing, including ageing and HIV over the last three and ageing. The participants discussed diabetes, cancers and osteoporosis. years. The events were attended by a range of issues that were important around 30 people living with HIV. to them and the discussions were continued overleaf

HIV Australia Volume 8, No. 3 | 23 continued from previous page

In our group discussions, several Our participants told us stories about Self-esteem issues participants talked about the speed by moving into less stressful careers for Self-esteem was a common issue raised which they noticed their ageing process the sake of their health and wellbeing, in all the discussions. Participants spoke increase. They mentioned things like sacrificing long term employment about grief and loss around losing loss of energy, changes to body shape, prospects and financial security in the friends – either to the epidemic or a general sense of physical decline and process. Several participants highlighted loosing touch because of growing old. changes in mood. While these issues fears about how they will get by once This grief was compounded by people’s are probably commonplace for most they reach a point when they can no emotions around changes in their people who experience ageing, here longer work. health and body shape – changes that these stories came from a demographic For many, superannuation was cashed often occurred more quickly than usual. not typically considered ‘old’. in and spent years earlier. The money Some expressed real challenges with It should be noted that some some of these people make today will their own personal perspective and a participants accepted these changes as not be enough to cover their retirement genuine loss of self-confidence because manageable. Some noted the challenges costs, especially as these costs may be of this. they faced regarding these issues, but more expensive and come at a younger Resiliency in doing so they expressed a desire to age than is common. confront them by trying to understand Linked to this uncertainty – this loss Interestingly, in contrast to the issues how to minimise the impact on their of control in terms of life planning of self-esteem raised above, other men bodies. These men were eager to – some participants highlighted a sense in the groups expressed a real sense of educate themselves as best they could. of depression. Depression was a resiliency, saying they had found their own coping mechanisms despite the Mental health and anxiety common theme that was raised in all the forums. However, it is important multiple challenges they faced over Many participants talked about a to note that some participants the years. They seemed to draw upon range of mental health issues they were challenged this notion, describing the not only their own personal resources, currently living with. The discussions benefits of their sea change and the but were able to identify appropriate made it clear that many of these men fact that they worked hard to make support services at critical junctions experienced anxiety around growing their early life-changing scenarios a throughout their experience of living older and ageing at increased rate. success, maximising the benefits of with HIV. These people also gained For some this was happening in the these life changes. valuable insight from hearing about absence of a partner, family or network the lived experience of others, Another prominent theme that of close friends, which contributed to highlighting the ongoing need for emerged was dementia. Many were their anxiety. facilitated support structures that bring aware that dementia is sometimes together people to share experiences It was not only physical and emotional linked to advanced stages of HIV about living with HIV. changes these men were confronted disease progression, particularly among with – for many it was about the life those who have been living longer-term Mainstream services changes they had commenced years with HIV. The burden of knowing Another common theme participants earlier. Many of these men had given that dementia may cause cognitive raised was the lack of aged-care up careers and more secure employment impairment linked to HIV, and may facilities for the gay, lesbian, bisexual back when the ‘Grim Reaper’ was occur earlier in life, caused some and transgender (GLBT) community telling them they were about to die. participants to express anxiety. more broadly. With the absence of mainstream aged-care models, many people living with HIV who took part in the ACON forums expressed fears Another prominent theme that emerged was about their vulnerability regarding the possibility of needing to move to dementia. Many were aware that dementia is an aged-care facility some time in the future. sometimes linked to advanced stages of HIV If a GLBT-friendly aged-care facility is not available then what implications disease progression, particularly among those who might there be for people living with HIV – in this case gay men living with have been living longer-term with HIV. HIV – who are growing older and

24 | HIV Australia Volume 8, No. 3 in need of specialised services? How Providers like ACON need to offer GLBT and HIV sensitivity training would an ageing HIV-positive person a range of relevant psychological and packages for the aged-care sector. We be treated in a mainstream aged-care social support services that connect are currently recruiting for this position facility – not only by staff but by others with the myriad of lived experience and plan to hold a series of capacity who were utilising the service? to offer an ageing HIV-positive building workshops across the aged- population in Australia access to an easy care sector in both Sydney and across Legal issues as possible path to travel. regional NSW. Throughout all of the ACON forums, Once a month ACON convenes a We know that the average age of participants spoke about a range of monthly work-group which focuses people living with HIV is increasing. legal and financial issues. Some I have mainly on policy and research issues Ten years ago the average age was in already touched on, but I would like to and has recently started dialogue with the mid 30s, today it is in the mid expand further on some of these here. a range of potential aged-care service 40s. We can expect that this age will As we know, until recently same-sex providers. ACON continues to hold increase even further over time. Today, partners have had limited recognition GLBT ageing forums and events, we need research to paint a picture of under Commonwealth law, particularly including events offered as part of the experience of growing older with in the event of the death of a partner. Senior’s Week. These events attract a HIV. If the minimal data we have is This issue was of particular concern to diverse cross-section of people growing correct, then people living with HIV the men in our sample, given some had older in the GLBT community. will need service-types and social already experienced this, or faced the support mechanisms that cater to the Specifically, on the issue of people living real possibility of this event occurring complexities of not only living with with HIV who are also ageing ACON in the future. Many expressed feeling HIV, but getting older and getting offers a range of services: vulnerable and unsure of their rights in older earlier. ■ the event of the death of their partner. Counselling for people This article has focused primarily Some highlighted recent experiences of experiencing a range issues on those who are living with HIV not being able to access their partner’s associated with living with HIV and are already experiencing ageing. superannuation, as well as stories and growing older We also need to understand the about joint possessions being taken ■ Healthy Life Plus gym and experience of those who are much by relatives of the deceased. Many wellness program younger and more recently diagnosed, were relieved to learn of recent ■ Community Support Network who are likely to experience ageing changes in Commonwealth law that offering home and community in the decades ahead. Will this sub- now positively impacted on their own support population have unique experiences personal situation. ■ ACON has developed with AFAO that need further consideration? Some participants highlighted the and NAPWA a printed and web- Reference issue of being single and growing older based information booklet for 1. This resource is available by contacting without family or friendship networks people living with HIV who are your local PLHIV organisation or AIDS in place. These people expressed growing older. The resource is titled Council or can be downloaded at: http:// concerns about their own situations, www.acon.org.au/hiv/news/growing- Ahead of Time: A practical guide to older-with-HIV mentioning issues such as guardianship growing older with HIV 1 and who to appoint in the event of ■ ACON’s Positive Living Centre declining health. In these scenarios and Luncheon Club services the Public Guardianship offers some provision, however for some people also caters to well over 1,000 felt this was not a suitable outcome registered clients between them, – their desire was for support on a more many of whom are experiencing intimate level. growing older with HIV and these services ensure this client segment ACON’s responses to the issues have a social support network to draw upon. After years of uncertainty around living with HIV, and now the real possibility ACON also recently received funding that for many of the people we spoke to from the Commonwealth Government living with HIV means both growing to collaborate with the Aged and older and doing so earlier, there are Community Services Association Russell Westacott is Director of Client real challenges for service providers. of NSW and the ACT to develop Services at ACON.

HIV Australia Volume 8, No. 3 | 25 ‘We don’t have any of those people here … ’

By Jude Comfort, Rita Freijah, Barbara Horner, Alexandra McManus, Graham Lovelock and Michelle Hunter

Most people ageing with HIV in Australia are, and will continue to be, Introduction

gay men. For those who avoided disclosing their sexuality throughout their GRAI (Gay, lesbian, bisexual, trans lives or who have limited disclosure to a small circle, the prospect of dealing and intersex Retirement Association with aged-care services can be daunting. Inc.)1 recently released the findings of a 12-month research project conducted For many older gay men diagnosed with HIV in the eighties or nineties, the in Western Australia (WA), looking at concerns around disclosing sexuality are compounded by past experiences of the accommodation and service needs stigma and discrimination due to their sexuality, with additional fears around of older non-heterosexual people. The disclosure of their HIV-positive status. research was supported through a Lotterywest Social Research Grant and The GRAI research outlined in this article raises important issues that must involved collaboration between Curtin be addressed in planning for the diversity of the Australian population University, through the WA Centre – planning that needs to acknowledge the issues faced by the Australian for Health Promotion Research, the Centre for Research on Ageing, Curtin cohort of gay men ageing with HIV. (Eds.) Health Innovation Research Institute and GRAI. The project came about from formative research conducted by GRAI and researchers at Curtin University in 2006/07, confirming that older and ageing gay, lesbian, bisexual, transgender, intersex (GLBTI) individuals accessing retirement and residential aged-care services in WA

26 | HIV Australia Volume 8, No. 3 experienced unmet needs and fears population was concealed from the for this group. Qualitative data was of discrimination.2 This was in line general population with few people collected through two focus groups. with other national and international disclosing their sexual orientation for research indicating that older GLBTI fear of reprisal and/or prosecution.10 Results people were likely to be disadvantaged As a result, getting older for many The full findings in the final report in the aged-care sector due to their GLBTI people can mean increased are available at www.grai.org.au. A minority sexuality. The research was fear of being ‘outed’ after a lifetime of brief summary of some of the key used to develop best practice guidelines avoiding disclosure of their sexuality, findings are presented in this section. to assist providers to deliver more or fear of lack of understanding and 86% of Facility Survey respondents GLBTI inclusive services and help in support as they seek assisted care. were unaware of any GLBTI residents addressing challenges faced by members Concealment of identity renders older or supporting families currently or of the GLBTI community.3 This GLBTI people invisible and may result previously accommodated within their article discusses the background to in service providers unintentionally facility. Only 30% of respondents the research and presents the best failing to address their needs beyond agreed that their facility recognises practice guidelines. the physical. that GLBTI residents have specific needs. The majority ofFacility Survey Background There is a growing body of research respondents (79%) agreed, or strongly around GLBTI gerontology within In addition to the usual issues facing agreed, that a resident’s sexuality was Australia and internationally. older adults, such as loneliness, not their concern, however over half Although there may be context specific isolation, loss of autonomy and (88%) indicated that a resident’s beliefs considerations, recurrent key themes increasing dependence, older GLBTI and personal diversity were promoted identified are: individuals may experience further within their facility’s policies and 4 ■ stressors. These are usually associated historical experiences of procedures. The majority ofFacility with sexual orientation, disclosure homophobia/discrimination ■ Survey respondents (66%) felt that of sexual orientation and/or gender current experiences of they provided a GLBTI-friendly and identity to health care providers, homophobia/discrimination trusting environment which ‘treated ■ discrimination, lack of legal recognition, concealment of identity – everyone the same’. little, if any, protection of lifetime invisibility ■ Table 1 (on the following page) partnerships, and limited opportunities ageism within the GLBTI and 5,6 summarises the attitudes of facilities to to meet other older GLBTI people. wider communities ■ GLBTI issues. The majority of facilities Furthermore, the heteronormativity impact of homophobia/ did not provide any training on GLBTI (presumption and preferences of discrimination on the quality of issues, and their policies did not address heterosexuality) of retirement and care delivered ■ GLBTI issues. residential aged-care facilities is a heteronormativity, and ■ concern for many older GLBTI people. social isolation. Best practice guidelines Heterosexual assumptions coupled An important outcome of the with the notion of older people being Research methodology project was the development of best asexual, can make GLBTI people feel The research outlined in this paper practice guidelines for retirement that their same-sex relationships are not is unique in Australia as it sought to and residential aged-care providers valued or understood and that partners examine experiences and attitudes in Western Australia which seek to will be excluded in care planning and of service providers around GLBTI encourage management and staff to decision-making.7 Additionally Addis client issues. Organisational data were adopt practices that create an inclusive reports some older GLBTI people fear collected through a self administered environment, accepting and welcoming a lack of recognition and support of Chief Executive Officers (CEOs) of all groups, including GLBTI people. their ‘families of choice’ from service Survey and a separate Facility Survey The guidelines are also designed to providers.8 to facility managers. Forty CEOs of provide an operational context whereby Older GLBTI Australians grew up retirement and residential aged-care providers of retirement and residential during a time where homosexuality organisations in WA with multiple aged-care are better able to recognise, was illegal, and those found to be facilities completed the CEOs Survey, understand and meet the specific engaging in homosexual activities with a response rate of 32.5% (n=13). needs of GLBTI people. were prosecuted. The negative The CEO Survey was also sent to single attitudes of society in general entity organisations and a 14.5% (n=23) towards homosexuality led to response rate was achieved. Operational persecution, condemnation, hatred and data were collected through a statewide discrimination, with homosexuality Facility Survey sent to 320 retirement commonly viewed as a ‘sickness, sin and and residential aged-care providers in disgrace’9. Consequently the GLBTI WA, with a response rate of 26% (n=83) continued overleaf

HIV Australia Volume 8, No. 3 | 27 continued from previous page

Table 1 Facility attitudes with regards to GLBTI issues (n=83)

Strongly Strongly disagree Disagree Unsure Agree agree n (%) n (%) n (%) n (%) n (%)

Your Facility recognises that GLBTI residents have specific needs 4 (5) 18 (23) 33 (42) 19 (25) 4 (5) Same-sex partners of a resident have the opportunity to be involved in that person’s care 0 (0) 0 (0) 13 (10) 30 (38) 40 (50) Your Facility provides a GLBTI-friendly environment 0 (0) 3 (4) 24 (30) 32 (40) 21 (26) Non-judgemental language is used and promoted within your Facility’s printed policy and procedure documents 1 (1) 1 (1) 14 (17) 32 (40) 33 (41) All residents’ beliefs and personal diversity (e.g. religious, cultural, sexual) are promoted within your Facility’s policies and procedures 0 (0) 2 (3) 7 (9) 24 (30) 46 (58) A resident’s sexuality is not of concern to your Facility 2 (3) 7 (9) 8 (10) 29 (36) 34 (43) Staff treat residents as individuals (not defined by their cultural/ political/sexual identity) at your Facility 0 (0) 0 (0) 4 (5) 21 (26) 55 (69) Your Facility provides a trusting environment where residents feel safe enough to disclose their sexual orientation 0 (0) 1 (1) 14 (17) 33 (41) 33 (41) GLBTI issues are not important to your Facility 5 (6) 29 (37) 17 (22) 17 (22) 10 (13) GLBTI residents’ needs are openly discussed at your Facility 2 (3) 20 (26) 25 (45) 14 (18) 6 (8) Other residents are encouraged to support a GLBTI-friendly environment 3 (4) 12 (16) 44 (57) 14 (18) 4 (5)

To achieve best practice for aged-care providers as a result of their starting point for fundamental national accommodating older GLBTI people past experiences of discrimination.12 reform at an organisational level, and five principles were identified: Additionally, concerns are raised would lay the foundation for positive 1. inclusive and safe environment regarding the fact that a large number changes in retirement and residential 2. open communication of residential facilities are run by faith- aged-care facilities. based agencies.13 Although some of 3. GLBTI sensitive practices Although HIV does not exclusively these facilities may be accommodating 4. staff education and training, and affect gay men, issues around planning to all seniors, others exclude potential for aged-care have particular resonance 5. GLBTI inclusive organisational residents (including GLBTI people) for older gay men living with HIV. policies and procedures. who do not adhere to their particular Some people living with HIV may religious conventions. Implications for service providers require access to retirement and Heteronormativity and homophobia residential aged-care services at an The findings of this research have a exist within the broader community and earlier age than would generally number of implications for providers they are also likely to exist in retirement be expected. Naturally occurring of retirement and residential aged- 14,15 and residential aged-care facilities. age-related conditions such as care if they are to adequately meet the It is essential that agencies provide cardiovascular disease, diabetes, unique needs of older GLBTI people. inclusivity training for their staff at osteoporosis, some cancers and It should be acknowledged that while an organisational and facility level. dementia are presenting at an earlier a response rate of 26% of facilities Findings from this research indicate age for some people living with HIV, (n=83) is not optimal, this rate is what that few agencies currently make such causing early onset of ageing.16 This has can be expected when surveying such training available for their staff, or implications for service providers, as the organisations.11 Respondents included have GLBTI-inclusive organisational need to accommodate much younger a variety of facilities across location policies and procedures that would people with complex and unique care (metropolitan – 53%, rural – 40%, assist in supporting long term change in requirements increases. remote – 7%), size (61% with staffing attitudes and practices. levels of 25 full-time equivalents or less) Further research is required to explore and ownership (55.6% not-for-profit). The future the implications of HIV-related early ageing for providers of residential It is clear that older GLBTI people While these best practice guidelines aged-care; and the social dimensions of currently accessing retirement and were developed based on research accommodating people living with HIV. residential aged-care are a hidden completed in Western Australia, they population. Older GBLTI people in have national merit. The nation-wide general do not feel safe to disclose adoption of the guidelines developed their sexual or gender identity to as part of this research would provide a continued on page 46

28 | HIV Australia Volume 8, No. 3 Thriving and surviving: ageing well with HIV

By James May

James May speaks with Ian first tested for HIV in 1984, Ian has never been confronted with while living in Sydney, and was the ‘it’s your fault’ scenario and yet he’s three people who have diagnosed HIV-positive. He says, aside always been cautious about disclosure from some initial fear amongst family so as to avoid contending with people lived with HIV for over and friends, he has never experienced who might not be so open-minded. any stigma from being open about his Interestingly, he says he gets a stronger twenty years about their positive status. He says that even his reaction from people when disclosing relatives soon adjusted to the news, after his sexuality than his HIV status. experiences of living a little education. ‘Homosexuality still seems to provoke more fuss than the virus’, he says. Since 1992, Ian has lived in northern long-term with the virus NSW and believes this is somewhat He has always been nervous about responsible for his overwhelmingly disclosing his status to sexual partners, and their perspectives favourable experiences. ‘It’s a colourful and says he probably always will be. ‘I area which celebrates diversity, so it’s assume the worst, but 99% of the time on the changing social easy to be open about my sexuality and I get a favourable response.’ Ian says he HIV status.’ Ian finds people are more always discloses his status during sexual context of the epidemic aware about HIV these days, seeing it as in Australia. a chronic, manageable condition. continued overleaf

HIV Australia Volume 8, No. 3 | 29 continued from previous page

encounters where anal sex is involved, ‘Having a positive attitude and staying she discovered Marianne’s status. ‘She or if he wishes to pursue a connection active is the most important thing.’ insinuated that I was a drug user and with someone. shouldn’t be sexually active.’ Ian has just completed a two week As a highly social person, Ian has kayaking trip through the Great According to Marianne, the ‘this gone out of his way to participate in Barrier Reef. can’t happen to me’ mentality is gay support networks and community Marianne has been HIV-positive still out there. She knows of people groups. He has experience of HIV peer for 21 years and she feels not much in their forties who have recently support in the Lismore region, where has changed in terms of stigma seroconverted. ‘Not having used he found people to be isolated due to associated with HIV in the heterosexual condoms in their youth, many people a lack of social skills and/or previous community. She says, ‘Most guys are of this generation are quite ignorant drug and alcohol issues. He says that shocked when I tell them. They don’t about the safe sex message.’ Marianne staying connected to the community want to use condoms. Also, the thought believes that people should be educated is extremely important in terms of of having a relationship with someone, from an early age, and says that girls thriving and surviving. ‘Personally, who in their mind could die young is need to know that it’s okay to be I find it very useful to engage with too painful [for them] to consider. They assertive and carry condoms. ‘People other people’s stories and avoid being say they want to be friends but I never need to know there’s a lot more to sex consumed with my own.’ see them again.’ than penetration; there needs to be more humour in sex education as well.’ Although Ian is a great believer in According to Marianne, straight Western medicine, in his 26 years men don’t know how to deal with Marianne says it’s difficult for spent with HIV he has explored the emotions that surface during positive women to find intimacy with many alternative therapies, including disclosure and won’t make an effort to heterosexual men. ‘Some people tell naturopathy, Chinese herbs, vitamins, learn about the realities of the virus. me to become a lesbian, or they try to yoga and massage. He says he did not She has also lost several clients in set me up with someone else who is commence standard HIV therapy for her work as a beauty therapist after positive. I don’t want to think that I can nine years because he never felt sick. ‘I revealing her status. ‘People can’t help only be with a guy who has the virus.’ never thought the virus would kill me, but see you as “different” – they’re She says that many positive women although I’d always freak out when I afraid I might infect them. It makes don’t bother dating because they can’t came down with the flu.’ them feel vulnerable – as though it deal with the possible consequences of disclosure, like rejection and feeling Although his health is great, he does could’ve been them who was diagnosed with the virus.’ unworthy of love. ‘I never give up hope have some concerns about the possible of things changing. It helps me weed correlation between dementia, ageing Marianne was recently discriminated out the ignorant ones; it’s made me and the long-term use of antiviral against by a senior health specialist at a more selective.’ drugs. He is also concerned about Melbourne hospital. The doctor agreed cholesterol and cardiac health, although to carry out a routine, non-invasive Marianne surrounded herself with gay he regularly monitors this with his GP. procedure, but then pulled out when friends after the diagnosis, but felt isolated in the heterosexual community, despite meeting acquaintances through her fit, active lifestyle. She has always Although his health is great, he does have been very open about her diagnosis, leading her to get involved with various some concerns about the possible correlation public education campaigns. Her first major media exposure was through between dementia, ageing and the long-term being part of the Positive Women’s triathlon team at the World Masters use of antiviral drugs. He is also concerned about Games, in 2002. Marianne’s health has remained cholesterol and cardiac health, although he consistently strong. Complimentary medicines, diet and exercise have regularly monitors this with his GP. all played a pivotal role in this. She

30 | HIV Australia Volume 8, No. 3 survived with a minimal T-cell count much since the diagnosis. ‘They came I could wind up immune to these drugs.’ and no medication for a long time. to the hospital when I was sick with According to the three people It was only in 2005, after a bout cancer, but we had no contact after that. interviewed here, the reality of living of pneumonia, that she needed to I think the family carries a bit of guilt with HIV in the gay community commence antiviral therapy. Although about the whole thing.’ has become far easier, whereas the the medication is working well, she Dale was in a serodiscordant situation is still quite difficult for their says she is looking forward to a relationship for three years, and the heterosexual counterparts. The woman treatment break. virus was never an issue. He is currently I spoke with faces on-going ignorance ‘HIV has been tough, but it’s made me enjoying an open relationship with within the heterosexual community, realise what’s really important – friends, another positive guy. He has always had whereas the gay men generally had family, health, happiness – being a healthy sex drive. Even after his initial more favourable experiences in a social involved in the world. It’s made me diagnosis in his twenties, he remained and sexual context. Many young gay focus on the positive, not the negative. highly sexually active. During that time men are actually quite blasé about the It’s made me aware of the mind-body- he usually went to saunas for casual risk of HIV infection, according to the spirit connection; the importance of sex because disclosure there was less of men I spoke to. having discipline and never giving up.’ an issue. He says that disclosure still Interestingly, discrimination from doesn’t cause many problems, ‘as soon as Marianne has just competed in the health service practitioners was I tell people I’ve been going for 22 years national power lifting championships mentioned by two out of the three they relax’. and came fourth in a field of women respondents. These situations left them which included world title holders. Dale has felt isolated living with the feeling judged and disempowered. virus at times, although he’s always Dale has been HIV-positive for 22 had close friends, as well as an aunt, to All three participants stated that social years. He says that many guys under confide in. He also maintains contact and support networks are extremely 40 are blasé about the virus. ‘The “it with peers and support staff at the important in terms of thriving and won’t happen to me” syndrome is very Positive Living Centre in Melbourne. surviving and each person has actively prevalent and they’re happy to put ‘Tending to my plants and painting sought to avoid being isolated by themselves at risk.’ He says he has with acrylics is a great release as well.’ their diagnosis. Location, lifestyle and usually received great support from Dale has also been involved with the social skills play an important role in health services. The one exception Positive Speakers’ Bureau for several maintaining these connections and was when a nurse at a major clinic in years. ‘There’s a need to educate the fostering health and well-being. Melbourne was very condescending heterosexual community, as well as about his decision to take a HIV No-one I interviewed felt as though young guys who are just coming out’, treatment break while undergoing living with HIV had accelerated he says. chemotherapy for cancer. ‘I didn’t feel their ageing process, although many like my body could cope with both He’s had a few rough times with HIV, mentioned concerns about possible treatments at once, and she was very enduring side effects like diarrhoea and side-effects from long-term antiviral rude when I made the decision to stop rashes whilst taking AZT during the use, such as dementia and cardiac antivirals. She didn’t give me credit for early nineties. He was diagnosed with health issues. Each person experienced knowing what my own body needed.’ anal cancer five years ago and had to illness, to varying degrees, and has gone undergo three months of chemotherapy on to live active, healthy lives. Antiviral Dale says that positive people suffer far and radiotherapy. The cancer is now therapy, complimentary medicines, diet, less discrimination these days. ‘Many in remission and the combination of exercise, and a positive outlook have people used to think they could catch antivirals he is currently on has been clearly enabled this. it from casual contact [like kissing].’ working well for three years. ‘It’s given He doesn’t venture into the gay scene me a bit of a belly, but I feel fine other anymore, because he says ‘the gay scene than that. My other combinations failed revolves around party drugs like ice and because I missed doses – I won’t do that there’s no sense of community.’ again; it’s not worth the grief.’ He says James May is a writer of short fiction, His parents were fine about his HIV that laughter is the best medicine. ‘I theatre and freelance journalism. His status, but his brothers were very appreciate each day because you never work has been published in various uncomfortable, and he hasn’t seen them know what might happen. Who knows? magazines and anthologies.

HIV Australia Volume 8, No. 3 | 31 New frontiers: exploring the psychosocial challenges of growing old with HIV

By Anthony Lyons, Rachel Koelmeyer, Jeffrey Grierson and Marian Pitts

As we enter the fourth decade of antiretroviral therapy (HAART), new Futures have been conducted by the the HIV epidemic, what it means to challenges are emerging. Already we Australian Research Centre in Sex, become infected and to live with HIV know that HIV-positive people who are Health and Society (ARCSHS).6–11 has changed enormously. This is largely aged over 50 have a higher incidence Through these surveys, thousands a consequence of advanced treatments of hypertension, low bone mineral of people from across Australia that now make it possible for people density, and lipodystrophy than their have described their challenges and living with HIV (PLHIV) to live into HIV-negative counterparts.3 They are experiences living with HIV. In the old age. Not surprisingly, the numbers also more likely to develop age-related most recent survey, 92% were men (of of older people with HIV are growing illnesses at an earlier age, including whom 85% identified as homosexual), rapidly. In the US, around 50% of coronary artery disease, osteoporosis, 7% were women, and less than 1% were all positive people are expected to be and dementia.4 The risk of heightened transgender. Overall, 41% were aged aged over 50 years by 2015.1 A similar toxicity from combining antiretroviral over 50. Based on the findings, older proportion is expected in Australia. In drugs with those for ageing-related people who are HIV-positive have fact, a study of men who have sex with illnesses has also become a growing good reason to feel optimistic about men in Australia has found the number concern5, potentially threatening further the future. However, there appear to of people living with the virus who are improvements in the quality of life for be a number of challenges to attaining aged over 60 has increased by around older HIV-positive people. a high quality of life that need to be 12% every year since the mid-1990s.2 Of course, the ingredients that make addressed. The following are some of This good news also means we are up a high quality of life extend beyond the psychosocial areas from the HIV now facing new frontiers. What is it good health. Our living conditions, Futures surveys where such challenges like to grow old with HIV? What are relationships, the ways we access and have been identified. the challenges? How can older HIV- gain support, and many other aspects Economic and living conditions positive people best be supported of our psychosocial circumstances in their senior years? While the all contribute to our overall sense of At the time of the HIV Futures 5 overall quality of life for this group wellbeing. Over the past twelve years, survey in 2005, Australian PLHIV has improved through highly active six separate surveys known as HIV who were aged over 50 were less likely

32 | HIV Australia Volume 8, No. 3 to be employed than the under-50s also report receiving greater support 1990s, at a time when living with and tended to work less hours overall from healthcare workers, general HIV was a far more frightening and in paid employment. They were also practitioners, and PLHIV organisations life threatening prospect than it is more likely to be living in poverty. – highlighting that health professionals today. The vast majority were gay men, Alarmingly, around 37% of older and PLHIV groups can have an many of whom lost friends to AIDS- positive people were living below the important role to play in the lives of defining illnesses and who lived in fear poverty line compared to 25% of the older HIV-positive people. The over- of dying themselves. They also suffered under-50s. On a positive note, data 50s are more likely than their younger greater impairment to their day-to- from the HIV Futures 6 survey in 2008 counterparts to know someone else who day functioning, while also having to shows that while the over-50s are still is HIV-positive and to feel supported confront a lack of employment and a less likely to be employed than those by HIV-positive friends. Despite all host of issues around being accepted under-50, there is no longer a divide this, with more than a third of older by a public that was more fearful of between the two age groups with HIV-positive people taking medication HIV-positive people (and arguably regard to living in poverty. In 2008, for a mental health condition, such as more homophobic) than today. approximately 30% of both the under- depression or anxiety, there is an urgent In addition, we have seen changes in 50s and over-50s were living in poverty. need for more effective targeting of the treatment regimens available (from The reduction in the proportion of mental health support. AZT monotherapy to HAART) older HIV-positive people living in and in treatment guidelines over the poverty is likely to be due to an increase Are we seeing a cohort effect history of the epidemic. All these in the number of hours worked and an among those ageing with HIV? experiences, plus others, are likely to increase in overall household income. Programs and services that seek to have shaped what it means to these people to be HIV-positive, as well as Relationships enhance the quality of life for older HIV-positive people will need to influencing the levels of assistance Older HIV-positive people are less take the above findings into account. they require from individuals and likely to be having sex than those under However, longer term planning and organisations. 50. However, a similar proportion of the overall effectiveness of programs The consequences of these experiences under-50s and over-50s report being may well depend on the answer to one may not all be negative. Having in a regular relationship (44% and crucial question: to what degree do the survived the pre-HAART era, many 41%, respectively). The difference psychosocial challenges and experiences older people living with HIV may be between the age groups with regard of the current group of older positive particularly resilient. Living into old to the proportion having sex is largely people reflect a general pattern of age, despite earlier prospects of dying accounted for by fewer over-50s having ageing with HIV? young, may also appear a blessing casual sex. There are reasons to suggest that to some and therefore a reason to feel positive about their lives. In fact, Stigmatisation and discrimination many of those in the current group of older people living with HIV have drawing again on HIV Futures data, Around a quarter of older HIV- an experience of ageing that may not when we compare positive people’s positive people report recent instances be reflected in future older positive of discrim-ination or being treated communities. Large numbers of this unfairly as a result of their HIV status. group were infected in the 1980s and continued overleaf Such discrimination can come from health service providers, such as being avoided or having treatment refused, as well as in the workplace and when seeking accommodation. On a positive note, the over-50s tend to report fewer instances of discrimination than the under-50s. Having survived the pre-HAART era, many older Support people living with HIV may be particularly resilient. While the over-50s are just as likely as the under-50s to use services targeting Living into old age, despite earlier prospects of HIV-positive people, they are less likely to use non-PLHIV services, suggesting dying young, may also appear a blessing to some that older positive people have a greater reliance on the HIV support sector than and therefore a reason to feel positive about their younger counterparts. Compared to the under-50s, the older group their lives.

HIV Australia Volume 8, No. 3 | 33 continued from previous page

ratings of their overall wellbeing, not Despite rapid growth in research on References only do they average at the positive end ageing with HIV, very little of the 1. Effros, R., Fletcher, C., Gebo, K., et al. of the scale, they are generally no lower available data is longitudinal. Simple (2008). Aging and infectious diseases: workshop on HIV infection and aging: for the over-50s than they are for the comparisons between older and what is known and future research under-50s. younger people may not provide the directions. Clin Infect Dis, 47(4):542–553. necessary framework for identifying 2. Murray, J., McDonald, A., and Law, M. The impact of having been diagnosed all the experiences and challenges (2009). Rapidly ageing HIV epidemic in the pre-HAART era also becomes among men who have sex with men in of growing old with HIV. For this apparent when compared with those Australia. Sex Health, 6(1):83–86. reason, researchers at ARCSHS, in 3. Onen, N., Overton, E., Seyfried, W., et who were infected later. People, collaboration with NAPWA and other al. (2010). Aging and HIV infection: a aged over 50, who were infected comparison between older HIV-infected PLHIV organisations, will soon be pre-HAART, tend to rate their persons and the general population. HIV launching ‘LifeTimes’, a survey that wellbeing slightly higher than those Clin Trials, 11(2):100–109. comprehensively explores the health 4. Simone, M. and Appelbaum, J. (2008). HIV infected post-HAART. They are also and wellbeing of older HIV-positive in older adults. Geriatrics, 63(12):6–12. more likely to receive support from 5. Grabar, S., Weiss, L., and Costagliola, D. gay men and their HIV-negative HIV-positive friends, but less likely (2006). HIV infection in older patients in counterparts. With the survey to be the HAART era. J Antimicrob Chemother, to access and receive support from repeated every year, respondents will 57(1):4–7. PLHIV organisations. be given an opportunity to keep the 6. Lyons, A., Pitts, M., Grierson, J., Thorpe, R., and Power, J. (in press). Ageing with What all this means is that identifying PLHIV support community continually HIV: health and psychosocial wellbeing of the challenges of ageing with HIV may informed about their changing older gay men. AIDS Care. not be straightforward. The experiences experiences of growing older with HIV. 7. Pitts, M., Grierson, J., and Misson, S. (2005). Growing older with HIV: a of those who were infected pre- How quickly and effectively health study of health, social and economic HAART may paint a different picture and social service providers adapt to circumstances for people Living with HIV to the way ageing with HIV might in Australia over the age of 50 years. AIDS and cope with this new frontier look in the future, especially as more Patient Care STDS, 19(7):460–465. will depend on having an accurate, 8. Grierson, J., de Visser, R., and Bartos, M. of those who were infected after the detailed and up-to-date picture of (2001). More cautious, more optimistic: introduction of HAART enter old age. the changing health and psychosocial Australian people living with HIV/AIDS, 1997–1999. Int J STD AIDS, 12(10): Where to from here? needs of a rapidly ageing HIV-positive 670–676. community. This is especially so for 9. Grierson, J., Pitts, M., and Misson, S. To understand the psychosocial those who were infected post-HAART (2005). Health and wellbeing of HIV- positive Australians: findings from the third challenges of growing old with HIV, as they enter old age and transform national HIV Futures Survey. Int J STD an important step is to monitor the demographics of the current AIDS, 16(12):802–806. changes in the quality of life of older older community. Most critical of 10. Grierson, J., Pitts, M. K., and Thorpe, people living with HIV from year to all will be the need for the HIV and R. (2007). State of the (positive) nation: findings from the fourth national Australian year. Only through such longitudinal aged-care sectors to work together, HIV futures survey. Int J STD AIDS, research can we distinguish between the with a combined focus on both the 18(9):622–625. needs and experiences of the current clinical and the psychosocial, to ensure 11. Grierson, J., Power, J., Pitts, M., et al. older group and the general, more that programs and policies effectively (2009). HIV Futures 6: Making Positive Lives Count. Melbourne, Australia, The systemic patterns related to growing address the diverse and changing needs Australian Research Centre in Sex, Health old with HIV. of this community. and Society, Latrobe University.

Dr Anthony Lyons is a Research Fellow with the Faculty of Health How quickly and effectively health and social Sciences at ARCSHS, and is the corresponding author for queries service providers adapt to and cope with this related to this article. The Australian Research Centre in new frontier will depend on having an accurate, Sex, Health and Society (ARCSHS) is a leading national and international detailed, and up to date picture of the changing centre for research on sexuality, health and gender. ARCSHS conducts health and psychosocial needs of a rapidly ageing interdisciplinary research on sexuality and health, and promotes social HIV-positive community. justice outcomes using its research.

34 | HIV Australia Volume 8, No. 3 Ready or not: addressing stigma and promoting wellbeing of people living with HIV in aged-care By Dr Catherine Barrett, Associate Professor Anne Mitchell, Lizzi Craig and Dr Liz Crock

Introduction wellbeing of HIV-positive, older gay Client experiences of aged-care Given the increasing number of people men. The study found that: In 2008, a study was undertaken in ageing with HIV, it is important that ‘… the strongest predictor of subjective Victoria to explore the experiences of wellbeing was men’s reported history aged-care services are ready to meet older gay, lesbian, bisexual, transgender of discrimination from medical their care needs. and intersex (GLBTI) people in service providers around their aged-care.2 TheMy People study The aged-care sector currently supports HIV status, therefore highlighting included interviews with eight gay or a large number of older Australians perceived stigma as a crucial element 1 bisexual men, one of whom disclosed to remain in their own homes, with in overall wellbeing.’ being HIV-positive. Most of the men residential services provided to about This article looks at the readiness of raised concerns about the readiness of 5% of people over 65 years. These aged-care services to meet the needs aged-care services to care for people supports need to take into account of people living with HIV from the who are HIV-positive, or assumed to particular issues faced by older people perspective of older HIV-positive be so. Several described how carers living with HIV. However, recent people (and those assumed to be HIV- assumed that they were HIV-positive studies indicate that aged-care services positive), and from the perspective because they were gay. For example, do not understand the needs of older of people working in aged-care. We Andrew described having a home care HIV-positive people and discriminate then examine these perspectives in the provider from his local council visit against this cohort because of fear of current context of aged-care service his home daily to shower his partner HIV. These findings are of particular provision, to illustrate the need for Bill. Andrew described inadvertently concern in the context of a recent a person centred strategy to educate study of the health and psychological aged-care service providers. continued overleaf

HIV Australia Volume 8, No. 3 | 35 continued from previous page revealing that he and Bill were in a exploring their perspectives on the go in there and don’t wear gloves to relationship and noted that in response care of GLBTI clients.4 The study protect themselves. If they get AIDS “The carer wouldn’t really shower Bill included three focus groups and who are they going to sue?” 7 after that. Bill was blind, deaf, full 16 interviews with aged-care service These views demonstrate the fear of arthritis and needed all the help providers. Participants were given a of contagion that is associated going. I think the carer was concerned scenario of a newly admitted HIV- with ignorance about HIV and its that we were gay. The guy thought: positive client, and they were asked transmission. Many of the study he’s gay and has he got something else to describe how staff in their service participants reported that they had not wrong with him? He was worried would respond to this client. Most received any education around HIV about HIV/AIDS. That’s what I of the study participants reiterated since the ‘Grim Reaper’ Australian think. I phoned the council and told the misinformation and fear of national television campaign of the them. They were very good. I told contagion identified in the My People 1980s. Perhaps then it is not surprising them I didn’t want him back.” 3 study. One interviewee reported that that they fear HIV-positive clients. Other interviewees described aged- her colleagues: The importance of educating aged-care care service staff refusing to physically “ … would over-glove; there are service providers was reiterated in a touch them or ‘double gloving’ for all always staff who go too far; I don’t study conducted in aged-care across physical contact with them when it think staff have nursed enough HIV, 5 Sydney, in which service providers were was revealed that they were gay. As so they would freak out.” invited to complete a survey about a consequence all the interviewees Another reported that: their knowledge of HIV and their reported that they were reluctant to “ … some staff might steer away, not concerns. Of the 106 respondents, 55% access aged-care services and that they go near him, and avoid nursing him. said they worried about catching HIV hid their sexual identity when accessing They need the facts of how HIV is from a resident, and 62% said that they services to avoid being assumed to be transmitted and whether there going worried about passing on HIV to their 6 HIV-positive. 8 to be any dangers for them.” families after caring for the resident. The study was small and limited to the These responses were fairly typical This study reinforces the importance of experiences of gay men in Victoria. of the views expressed by other educating aged-care service providers However, the findings indicate that interviewees. The fear of the contagion to ensure the wellbeing of older some aged-care service providers do not of HIV, and the assumption that HIV-positive people. understand HIV, with the result that all gay men are HIV-positive, was A framework for education to their responses are discriminatory. This also identified in the focus groups. promote wellbeing is concerning given the finding that One focus group was held in a high- discriminatory responses are a crucial care facility where staff had recently The opportunity exists to educate aged- element affecting overall wellbeing. identified that a resident was gay. In care service providers about HIV in a reference to this resident, one of the way that addresses fears of contagion Staff perspectives focus group participants reported that: and promotes the wellbeing of HIV- The views of aged-care service “We don’t have the information on positive clients. This can be achieved providers on caring for HIV-positive whether he has AIDS. I feel sorry for by focusing on person-centred care. A people were described in a 2008 study the poor personal care attendants that person-centred approach is generally accepted in aged-care and has been identified by the Department of Health The opportunity exists to educate aged-care service in Victoria (2004) as a strategy to improve care for older people.9 providers about HIV in a way that addresses fears The person-centred approach adopted in our training, which is co-ordinated of contagion and promotes the wellbeing of HIV- by Gay and Lesbian Health Victoria, sets out to improve outcomes for the positive clients. This can be achieved by focusing care of people living with HIV by addressing the needs of both staff on person-centred care. and clients. The education begins by inviting staff to describe their fears, assumptions and beliefs. This provides

36 | HIV Australia Volume 8, No. 3 the opportunity to challenge myths and described earlier by Cummins et al.,11 References provide factual information, including aged-care service providers indicated 1. Lyons, A., Pitts, M., Grierson, J., Thorpe, reinforcing universal precautions. Staff that they were concerned about HIV R., and Power, J. (2010). Ageing with HIV: Health and psychosocial well-being of can then understand the experience contagion but were more worried (60% older gay men. AIDS Care, July, 1–9. of aged-care from the perspective of of respondents) about not knowing 2. Barrett, C. (2008). My people: Exploring the HIV-positive client. To achieve how to care for a resident with HIV. the experiences of gay, lesbian, bisexual, transgender and intersex seniors in aged- this we use narratives from older Aged-care service providers deserve to care services. Melbourne, Matrix Guild HIV-positive people, these providing be given the information they require Victoria Inc and Vintage Men Inc. humanising accounts of the experience to do their job well. 3. Ibid., 42 of living with HIV. This encourages 4. Barrett, C., Harrison, J., and Kent, J. Conclusions (2008). Permission to speak: Towards the service providers to look beyond the development of gay, lesbian, bisexual, virus to the experience of the person Until aged-care service providers are transgender and intersex friendly aged- living with the virus. The narratives care services. Melbourne, Matrix Guild educated about the needs of people Victoria Inc and Vintage Men Inc. also demonstrate for staff how a in their care living with HIV, their 5. Ibid., 45. discriminatory response can impact on responses will continue to be driven by 6. Ibid. 7. Ibid. client wellbeing. misinformation and misplaced fears, 8. Cummins, D., Trotter, G., Murray, K., This educational framework needs to and they will continue to miss the Martin, C. and Sutor, A. (2010). take into account the current context opportunity to promote the wellbeing Development of HIV resource for aged- care facilities. Australian Nurses Journal of aged-care services. For the past of this client group. The educational 18(3). 23. decade, the aged-care section of the model described in this article involves 9. Department of Human Services Victoria. Victorian Department of Health has exploring staff and client narratives (2003). Improving care for older people: experienced a number of challenges. as a way of addressing staff fears and A policy for health services. Melbourne, Continuing Care Section, Programs In 2004, concerns about care and staff meeting client needs. The narratives Branch, Metropolitan Health and Aged- recruitment led to a Senate inquiry into told by older HIV-positive people care Services Division, Melbourne. the aged-care workforce.10 The inquiry provide aged-care services providers 10. Senate Community Affairs References found that although the numbers with the opportunity to understand Committee. (2005). Quality and equity in aged-care. Available at: http://www. of older people requiring aged-care their clients’ journeys, including aph.gov.au/Senate/committee/clac_ctte/ services has increased, the aged-care challenges encountered and overcome, completed_inquiries/2004-07/aged_ workforce has decreased. Furthermore, and their experience of co-morbidities. care04/index.htm (accessed 17 April 2010). the inquiry recognised that poor pay This model needs to be considered 11. Cummins, D., et al. loc. cit. and increasing bureaucratisation of by those providing services to older aged-care made it difficult to recruit people in residential care, home care, The authors of this article can be and retain staff. While the inquiry community care, rehabilitation and contacted through Gay and Lesbian noted a shortage of appropriately acute care. Health Victoria. qualified staff in all health sectors, it reported that this was most notable in the aged-care sector. The inquiry also uncovered that the effects of an inappropriate skills mix included increased stress and a potential decrease in the quality of care. Education of aged-care service While the inquiry noted a shortage of appropriately providers also needs to take into account high turnover of staff, low qualified staff in all health sectors, it reported that literacy, low morale and significant workloads. There is also a need to this was most notable in the aged-care sector. recognise that many who work in aged-care services are motivated by The inquiry also uncovered that the effects of an good intent – that they would provide a higher standard of care if the education inappropriate skills mix included increased stress were provided to show them what was required. For example, in the study and a potential decrease in the quality of care.

HIV Australia Volume 8, No. 3 | 37 Regional Snapshot: HIV in China By Abigail Groves

With estimates that HIV prevalence in China, where significant numbers China’s population account for 36% is around 0.05%, China is considered of HIV diagnoses first emerged of HIV diagnoses.4 Jing and Worth a low-prevalence country. However, among injecting drug users; until observe that ‘Chinese health officials its enormous population of 1.3 billion 2003, injecting drug use was the most are still extremely reluctant to talk people means that there are large common mode of HIV transmission about the close association of drugs, numbers of people living there who in China. China is a huge country HIV and ethnicity’.5 are HIV-positive. Current estimates geographically, as well as in terms suggest there are about 740,000 of population and, although HIV Sex workers HIV-positive people living in China has been reported in every province, By 2007, heterosexual sex had today. This is only an estimate, diagnoses were concentrated in overtaken injecting drug use as the because rigorous HIV surveillance the provinces of Yunnan, Guangxi, 3 main driver of the HIV epidemic in and reporting is still a fairly recent Sichuan, Xingiang and Guangdong. China. Heterosexual transmission, development there. The total number These are the provinces closest to though, is largely concentrated among of China’s reported cases of HIV is the Golden Triangle and the Golden female sex workers and their clients. 326,000, which means that more than Crescent, and are centres of China’s Sex work has always existed in China, half of the positive people living there trade in illicit drugs. It is thought but the sex industry has grown with have not been diagnosed or reported. that HIV diagnoses in these provinces the de-regulation of the economy.6 Some 54,000 deaths from AIDS have represent about 70–80% of the For example, Guangdong, in the been reported, though it is likely that national total. south, was one of the first provinces to there have been more.1 These provinces are also home to many ‘open up’ to the west and to a market- Prybylski and Wilson argue that HIV of China’s ethnic minorities, who are driven economy; it is now China’s epidemics in Asia typically begin with disproportionately represented among most populous and most prosperous infections among injecting drug users, those diagnosed with HIV. Ethnicity province. Its thriving manufacturing which then spread to sex workers is a highly sensitive subject in China, industries have attracted millions and their clients.2 These ‘second which is overwhelmingly dominated by of workers from other provinces; by wave’ epidemics are augmented by Han Chinese, who make up 92% of the 2008 it was estimated that 20 million infections among men who have sex population; ethnic minorities are often people had migrated to Guangdong with men – creating an epidemic that socially and economically marginalised. from other parts of China. It was also is concentrated among these three One author suggests that the ethnic estimated that there may be up to risk groups. This pattern can be seen groups who make up the other 8% of 500,000 sex workers in Guangdong.

38 | HIV Australia Volume 8, No. 3 HIV prevalence remains low among men in China’11. The ancient Confucian people currently living with HIV who sex workers in China, with one study value of filial piety is still very strong in were infected through the blood trade. showing a national prevalence rate China, and gay men – many of them This estimate, though, is thought to be of less than 1%7, but it is higher in an only-child – are under enormous ‘low’, as many of those affected came high prevalence areas. The Chinese pressure to marry and continue their from poor rural communities without government has focused significant family line. Most of them do so, with access to HIV testing; those who died HIV prevention efforts on sex workers, estimates that as many as 80–90% of without ever being tested were not in an attempt to increase condom use gay men in urban areas marry under accounted for in official statistics.14 and awareness of HIV and STIs. This family pressure.12 For men with HIV, has been successful to some extent, the burden of secrecy is intense. Most Government response with the level of condom use reported of Zhang’s respondents kept their China’s national response to HIV by sex workers increasing dramatically sexuality and their HIV status secret changed markedly in 2003, as the 8 in the last ten years. The sex industry from their families. Moreover, the country’s government underwent is very diverse, with working conditions level of stigma attached to HIV made a generational change. On World varying enormously according to where concealing their status an ‘absolute AIDS Day in 2003, new Premier women work. As in most countries, the necessity’, even within the gay Wen Jiabao publicly shook hands with level of HIV risk that sex workers face community; a situation that does not HIV patients in a hospital in Beijing tends to fall as the level of control that encourage the formation of peer-led – a first for the Chinese leadership. 13 sex workers are able to exercise over responses to HIV. The SARS epidemic, which presented their work increases. an alarming wake-up call on the China’s blood trade Men who have sex with men importance of protecting public health, Up until 2007, some 23.6% of all is also thought to have influenced the Of particular interest to many China’s documented cases of HIV shift in government policy. From 2003, Australian readers is the situation (more than 50,000 people) had been the government moved decisively among gay men. In its 2010 UNGASS caused by participation in China’s to improve its response to HIV, report, China noted that ‘the trade in blood – that is, the sale of introducing the ‘Four frees – one care’ occurrence of new infections has been blood and blood products such as policy. This policy aims to provide free brought under control to a considerable plasma. The scale of the HIV epidemic counselling and testing, free ART degree,’ but added the qualifier ‘with caused by commercial trade in blood treatment for people living in rural 9 the exception of MSM populations’. products is probably unique to China, areas, free treatment for pregnant The rapidly rising prevalence of HIV and the problem has its origins in women with HIV, free education among gay men is one of the most government policy. In the mid-1980s, for children orphaned by AIDS, and worrying aspects of the epidemic in the Chinese government prohibited economic assistance to households China. Men who have sex with men the importation of blood products of people living with HIV.15 were not identified as a priority group such as plasma, precisely because HIV Implementation is far from complete for HIV prevention until recently; had been detected in some imported and human rights advocates are critical prevention focused largely on injecting products. This change in policy led to of the Chinese government’s treatment drug users and female sex workers. In a rapid growth in China’s domestic of people with HIV.16 But the Chinese contrast to many western countries, production of blood products, but this response has also delivered some men who have sex with men formed took place in the context of a rapidly impressive results, with the national a fairly small proportion of total HIV de-regulating economy. The emerging budget for HIV prevention and care infections: even in 2007, sex between industry was profit-driven and paid almost trebling between 2003 and men accounted for just 12.2% of blood donors were actively recruited 2008. The Chinese government has also diagnoses. By 2009, however, 42.2% of from poor communities. Infection embraced some harm minimisation new infections were acquired through 10 control was often non-existent and initiatives, introducing needle exchange male-to-male sex. large numbers of donors were injected programs and methadone treatment Moreover, HIV prevention among with infected products. This was in many areas; China now has more men who have sex with men in China particularly the case in the province of drug replacement clinics and needle faces significant obstacles. Historically, Henan, which has one of the highest social marketing programs than homosexuality has been heavily levels of HIV prevalence in China – any other country in Asia. In 2009 stigmatised in China. While recent driven largely by the blood industry. By years have seen the emergence of gay 1998, when the government acted to bars and clubs in many cities, Zhang regulate the blood industry, thousands says that ‘concealment of their sexual had been infected. The government’s identity is part of everyday life for gay official estimate is that there are 57,000 continued on page 46

HIV Australia Volume 8, No. 3 | 39 ‘Can you Imagine a World AIDS Conference without the Red Umbrellas’?1

By Michael Williams

Most of the coverage of the 2010 Turkewitz writes, these ‘strict US US because, as one official informed International AIDS Conference travel regulations ban two groups her, her ‘profile matches that of a (IAC) in Vienna has focused on novel heavily impacted by HIV – sex workers person likely to be trafficking in developments in clinical research, and those using illicit drugs’4. If a persons’. While the official in June notably the CAPRISA microbicide prospective traveller declares that he 2010 did not specify what the alleged trial and Professor Sharon Lewin’s or she has no convictions, they may convictions related to, it was clear excellent plenary on a future cure for be excluded if the US believes they from previous encounters that they HIV. Less remarked upon, but not have. Increased information sharing concerned Overs’ work within the sex entirely absent from the reporting2, between countries, and the US online industry some 30 years ago, and her is the doubtful participation in future visa waiver system (ESTA), means that subsequent sex worker activism. conferences of affected groups such as individuals so tagged can be prevented Pursuant to the US Immigration and sex workers. from boarding a plane. 6 Nationality Act , the ‘[g]eneral classes This is an issue because the IAC This is precisely what happened to of aliens ineligible to receive visas 2012 is in Washington DC. While my friend and colleague, the scholar and ineligible for admission’ include the United States was applauded for and sex worker activist Cheryl Overs. those convicted of ‘a crime involving recently repealing its prohibition on On 15 June 2010, Overs was at moral turpitude’ and those falling the entry of people living with HIV3, Heathrow about to board a plane to under the category ‘prostitution and its immigration laws (like most of the New York when she discovered her commercialised vice’7. This includes western world’s) are discriminatory ESTA application had been refused. any alien who: in their exclusion of individuals with According to the US immigration ‘ … directly or indirectly procures or past criminal convictions. Everyone official at the airport this was because attempts to procure, or (within 10 years applying to enter the US must of alleged and unspecified convictions of the date of application for a visa, declare these convictions on their dating back to the 1970s.5 Overs has admission, or adjustment of status) visa or visa waiver application. As been questioned before on entering the procured or attempted to procure or to

40 | HIV Australia Volume 8, No. 3 import, prostitutes or persons for the those who have used drugs – may References purpose of prostitution, or receives or encounter as they attempt to enter the 1. This was the question posed by Ms (within such 10-year period) received, US for the IAC 2012.11 A considerable Meena Saraswaith Seshu from Sangram, a grassroots sex worker organisation in whole or in part, the proceeds of number of sex workers (and groups in India, during her plenary at the 8 prostitution …’ . representing illicit drug users) attend International AIDS Conference in Vienna. and participate in these pivotal She was discussing the problems sex Extraordinarily, the bans apply even conferences. Presumably, many of workers may face in entering the United if the prostitution, or profiting from States for AIDS 2012: see Meena Senshu, their members will have convictions prostitution, occurred in a country ‘No Excuses: A Living Experience of the because their lives are criminalised and Struggle for Rights – Jonathan Mann where prostitution is not illegal. stigmatised; subject to both formal Memorial Lecture’ http://www.aids2010. It is more than ironic that Overs was legal sanction and discriminatory org/Default.aspx?pageId=270 (18 July enforcement practices in their home 2010). The ‘red flags’ are those of the travelling to New York to attend a Network of Sex Work Projects (NSWP). meeting of the Technical Advisory countries, reinforced by pressure from 2. Turkewitz,J. (2010, 26 August). A Group (TAG) to the UNDP’s Global the US. It is anyone’s guess what Conference for All? Travel Ban Threatens Commission on HIV and the Law. action the US will takes to remedy the IAC 2012, The Body. Available at: http:// potential exclusion of IAC attendees. www.thebody.com/content/art58277.html This is a group of scholars and experts (accessed 7 October, 2010). examining, and arguing for repeal It could reform its migration statutes, 3. AFP. (2010, 4 January). Rights Groups 12 of, unjust laws and practices which though this is considered improbable. Laud End of US HIV/AIDS Travel Ban. 4. Turkewitz, above n 1. impact on communities’ vulnerability A suggestion currently on the table is that the issue be solved by a temporary 5. Overs denies having ever been convicted to HIV. The TAG has since issued a of any offence and imagines that any statement that voices it concern over arrangement that would permit sex conviction must be the result of identify the incident.9 The statement also: workers and drug users to apply for an fraud. However, she cannot prove that 13 to the US authorities because she can ‘Requests UNDP to bring this matter exemption to attend the conference. Sex workers have dismissed the idea only access records for the previous to the attention of the International 10 years. This raises the question of AIDS Society so that it may take because to make such an application whether the Australian Government appropriate action to avoid similar necessitates effectively registering as provides more information about its an undesirable person with the US citizens to US Homeland Security than events impacting negatively on immigration authorities.14 it does to its citizens. participation at the International 6. 8 U.S.C. 1001, cited on US Department AIDS Conference to be held in This puts IAS in a difficult position. of State, ‘Classes of Aliens Ineligible to Receive Visas’ (accessed 10 September 10 Overs questioned ‘what was IAS Washington in 2012’. 2010) and on United States Immigration, thinking rushing into a US conference On one level, Overs’ refused entry to ‘Classes of Excludable Aliens Ineligible to as soon as the PLHA ban was Receive Visas’ (accessed 10 September the US is not surprising because the removed? Have they learned nothing 2010). US government has long treated sex about the human rights of affected 7. Ibid., sec. 212 [8 U.S.C. 1182]. work and trafficking as indivisible. It 8. Ibid., Seshu also spoke out about Overs’ communities since we boycotted the problems entering the US in her plenary at is a conservative, Christian country, 15 San Francisco conference’? the IAC, sounding incredulous that the US with a loud and powerful group of refuses entry on the basis that a person sex-negative women claiming to Surely the US and the International has been convicted of a crime of ‘moral be feminists, and a group of radical AIDS Society cannot host an turpitude’: above n 1. 9. Global Commission on HIV/AIDS and the feminists influencing government International AIDS Conference Law Technical Advisory Group. ‘Refusal of policy on the treatment of sex work. attended only by scientists, physicians, entry to Ms. Cheryl Overs, Member of the The President’s Action Plan for AIDS and academics, whose lives are far Technical Advisory Group’, 17 June 2010. Relief (PEPFAR), which distributes removed from the global community 10. Ibid. of people living with, and vulnerable 11. Turkewitz, above n 1. aid in resource poor countries, only 12. Ibid. provides funds to bodies which sign a to, HIV. Surely one of the enduring 13. Ibid. pledge to oppose prostitution. Unless lessons, from both successful and 14. Ibid. this is agreed to, the organisation does failed responses to HIV throughout 15. Private correspondence between the world, is that no credible strategy author and Ms Cheryl Overs not qualify for funds. Consistent with (10 September 2010). this approach, a great deal of money to combat the disease can be crafted has been directed to large, usually without the participation of those communities most affected. It is hoped anti-trafficking groups which set out that people living with HIV show to ‘rescue’ those in the sex industry, solidarity with other marginalised Michael Williams is a Research Fellow irrespective of their trafficked status, or groups in advocating for the repeal at the Michael Kirby Centre for Public indeed their express wishes. – not just in the US but everywhere Health and Human Rights. Cheryl Overs’ experience portends the – of laws that ban entry for individuals Overs is a Senior Research Fellow at difficulties that sex workers – and based on stigma and ignorance. the same Centre.

HIV Australia Volume 8, No. 3 | 41 parliament introduced a shockingly Holy writ vs. legal right: draconian Anti-Homosexuality Bill in 2009. The Bill proposed the death penalty for people living with HIV reflections on the Global who engage in homosexual activity.2 The government was pressured into Commission on HIV and declining to support the Bill only after it provoked outrage from the international community, including the Law and religious threats from donors to discontinue aid. In Senegal, more than 50 arrests have ideologies occurred in the last two years for homosexual conduct, with Muslim By John Godwin leaders calling for harsh punishments.3 In Malawi, a man and his transgender Religious fundamentalism is of the Commission’s Technical partner were sentenced to 14 years threatening international HIV Advisory Group. prison for sodomy in 2010. The couple responses on a number of fronts. In Over the next year, the Commission were later released, only after meetings diverse contexts, conservative Islamic will be holding regional hearings with UNAIDS and the Global Fund to and evangelical Christian influences in Africa, Asia, the Caribbean and Fight AIDS, TB and Malaria secured brand men who have sex with men Eastern Europe. The primary focus of a presidential pardon – and despite (MSM), transgender people, sex the Commission will be criminal laws the position of the Malawi Council of workers and people who use drugs as affecting MSM, sex workers, people Churches in favour of criminalising sinful and criminal. who use drugs and people living with homosexual conduct. While issuing the The HIV response demands an HIV. The Commission is tasked with pardon on humanitarian grounds, the evidence-based approach, not one bringing an evidence-based approach President reinforced the punitive legal based on ideology and sexual moralism. to these issues. and religious status quo, stating: It is timely that action is being taken The Commission comes at a time ‘These boys committed a crime against by the United Nations (UN) at the when the influence of religious our culture, against our religion, and global level to examine the evidence fundamentalism is manifesting in against our laws.’ 4 of the harm to HIV responses caused extremely disturbing events across the In Kenya, where sodomy is an offence by laws and police practices that target globe. Evidence-informed dialogue may punishable by 14 years imprisonment, marginalised populations. This will prove difficult with those who oppose the Kenya Medical Research Institute also require an assessment of the role decriminalisation based on ideology, was attacked by violent mobs in of religion in shaping laws and law rather than by reference to empirical enforcement practices. February 2010 for providing HIV data on the impacts of criminalisation 5 on health and human rights. services to MSM. In support of the The Global Commission on HIV protests, religious leaders from the and the Law The global ‘wave of hate’ Council of Imams and the National Council of Churches criticised the In June 2010, the United Nations The last two years has seen a surge Development Programme (UNDP) in damaging legal developments government for ‘providing counseling announced the establishment of the across the globe that either were services to these criminals’ and Global Commission on HIV and initiated by, or found vocal support demanded that the office that had the Law. from, religious interests. been providing services to MSM be shut down.6 The Commission comprises 14 Africa international experts, including The moralistic approach to sexuality Hon. Michael Kirby, former Justice Archbishop Desmond Tutu has is also reflected in a trend towards of the High Court of Australia (who referred to the ‘wave of hate’ currently criminalising transmission of HIV, with will also co-chair the Commission’s faced by gay men and transgender a notable increase in the number of people in Africa.1 This hatred is Technical Advisory Group), Dame African countries enacting HIV-specific legitimised by punitive laws and breeds 7 Carol Kidu MP from Papua New offences over the last few years. Guinea, and Charles Chauvel MP, New violence and discrimination. It is a hate that is blind to the critical importance Middle East, Malaysia and Indonesia Zealand Labour Party politician and of engaging those most-at-risk of HIV lawyer. Cheryl Overs, sex worker rights Punitive laws are enforced against as partners in HIV responses. activist and academic (based at Monash MSM in many countries where the University and at the Paulo Longo Influenced by American evangelical legal system is based on or influenced Research Institute), is a member Christians, a member of the Ugandan by Islamic Sharia law. Recent reports

42 | HIV Australia Volume 8, No. 3 include 25 men arrested in Syria in opposed by some church leaders, who non-intentional transmission of HIV June 2010, and 25 detained in raids in have referred to it as the ‘immoral Bill’.13 undermine the enjoyment of the May in Malaysia.8 In Fiji, the situation is complex. On right to health. He makes a number of recommendations to UN member In Indonesia, the Aceh legislature the one hand, progress has been made States to decriminalise same-sex sexual enacted a law in 2009 that provides for in decriminalising homosexuality, conduct, sex work and non-intentional penalties for homosexual acts of 100 despite protests from Christian and HIV transmission (see breakout box on lashes or eight months imprisonment. Muslim leaders. On the other hand, sex The status of the law remains unclear, workers have been targeted by punitive the following page). 14 as it awaits approval from the policing backed by religious groups. States that spoke at the Human Rights Governor. Also from Aceh, there are In 2009, Fiji’s New Methodist Church Council to oppose the recommendation reports that Sharia police harass and and police organised a coordinated that sex between men be decriminalised threaten transgender people (waria) crackdown on sex workers. The were Algeria, Bangladesh, Botswana, who work at beauty parlours, on the intimidating tactics employed were Egypt, Iran, Nigeria (on behalf of the grounds that Sharia law prohibits men reported as follows: Africa group), and Pakistan (on behalf 9 working in female environments. ‘Prostitutes who did not heed police of the Organization of the Islamic warnings to get off the streets were In March 2010, the Asia Conference Conference). Bangladesh went so far summarily trucked to a bridge over of the International Lesbian, Gay, as arguing that homosexual men and an ocean inlet where they were Bisexual, Transgender and Intersex transgender people are not marginalised ordered to make the six-metre leap Association (ILGA), due to be held (notwithstanding section 377 of into the water. But, according to in Surabaya, Indonesia, was cancelled the Penal Code of Bangladesh, which several of the women, Christian due to threats from the radical Islamic provides for life imprisonment for idealism sometimes broke down at Defenders Front.10 The conference homosexual acts). Pakistan accused the this point – they were made to service organising committee had obtained a Special Rapporteur of bias and criticised the arresting officers and had their police permit to hold the conference. the report for focusing on a ‘negligible purses and mobile phones stolen … The permit was withdrawn on the group’. Brazil, Netherlands, Norway and Others had their heads shaved. Some grounds that attacks by Islamic groups Switzerland expressed strong support were made to run alongside police were anticipated. The police claimed for the Special Rapporteur. vehicles in Suva’s streets. Under police that they were unable to guarantee the escort, they also had to attend Sunday In the Human Rights Council debate, safety of those attending the conference. afternoon crusades.’ 15 the USA stated that it could not When Islamic groups proceeded support the report’s recommendation to stage a protest, the conference While the New Methodist Church to decriminalise sex work. USA participants were forced to take refuge has since lost favour with the military still maintains its anti-prostitution for fear of imminent violence. regime, the punitive approach to sex policy, introduced during the Bush work continues in Fiji. TheCrimes In April 2010, the Islamic Defenders administration as a result of pressure Decree 2009 introduced very strict Front interrupted a three-day human from religious groups. The anti- prohibitions on sex work, which for rights training workshop for waria in prostitution policy requires agencies the first time criminalises clients and West Java. Islamic Defenders Front that receive USAID funding to oppose male sex workers, as well as female members reportedly stormed the decriminalisation of sex work. sex workers. hotel where the workshop was being The way in which UN member held, destroyed property and assaulted Meanwhile in the corridors of states responded to the Rapporteur’s participants. Rather than protecting the UN … report gives an indication of the rights of freedom of assembly, orders controversial territory that the Global The tension between religious ideologies were given by local public security Commission on HIV and the Law is and evidence-based approaches to officials to the National Human Rights required to navigate in its hearings and 11 public health and human rights has also Commission to stop the event. recommendations. Religion clearly has been on display at the UN. Pacific a role in influencing state positions. In June 2010, the UN Rapporteur This has also been evident in the recent The Pacific Sexual Diversity Network on the Right to Health reported to failed effort to refuse UN consultative has warned that the rise of fundament- the UN Human Rights Council on status to the International Gay and alist Christian churches in the Pacific decriminalisation of consensual sexual Lesbian Human Rights Commission, is generating increased stigma and 16 conduct. The Rapporteur, Anand a campaign that was led by Egypt hostility towards sexual minorities.12 Grover, has worked since the 1980s with backing from Malaysia, Pakistan, In Papua New Guinea, efforts by the as a lawyer championing HIV-related Saudi Arabia and a number of other Minister for Community Development human rights in India. His report to countries.17 Dame Carol Kidu and others to the Human Rights Council succinctly introduce a Bill to decriminalise homo- summarises how laws criminalising sexual conduct and sex work have been homosexuality, sex work and the continued overleaf

HIV Australia Volume 8, No. 3 | 43 continued from previous page THE SPECIAL RAPPORTEUR CALLS UPON STATES: (a) To take immediate steps to decriminalize consensual same-sex conduct The leadership challenge and to repeal discriminatory laws relating to sexual orientation and gender The clash of religious ideologies with identity, as well as to implement appropriate awareness-raising interventions evidence-informed approaches forms on the rights of affected individuals; part of the overall political context (b) To repeal all laws criminalizing sex work and practices around it, and to establish appropriate regulatory frameworks within which sex workers can in which the Global Commission enjoy the safe working conditions to which they are entitled. He recommends on HIV and the Law is operating. that States implement programmes and educational initiatives to allow sex The Commission will be adopting a workers access to appropriate, quality health services; transparent process, including public (c) To immediately repeal laws criminalizing the unintentional transmission of hearings and ‘interactive dialogue or exposure to HIV, and to reconsider the use of specific laws criminalizing mechanisms’ through ‘social networking intentional transmission of HIV, as domestic laws of the majority of States and new media technology’.18 This will already contain provisions which allow for prosecution of these exceptional provide opportunities for a broad range cases; of views to be heard, including from (d) To introduce monitoring and accountability mechanisms so as to ensure their obligations to safeguard the enjoyment of the right to health through opponents of rights-based approaches. legislative, judicial and administrative mechanisms, including policies and In its findings and recommendations, practices to protect against violations; the Commission needs to avoid the risk (e) To provide human rights education for health professionals, and to create an of preaching only to the human rights environment conducive to collective action and participation. converted. Identifying champions for Human Rights Council. Report of the Special Rapporteur on the right of everyone rights-based approaches from within to the enjoyment of the highest attainable standard of physical and mental health. Islamic and Christian communities is June 2010. strategically important if recommend- ations are to be heard where it counts. 14. UN commends Fiji’s draft HIV decree. of the damaging and indefensible anti- Constructive engagement with Available at: http://www.radioaustralia.net. prostitution policy. au/pacbeat/stories/201004/s2878104.htm faith-based organisations needs to (accessed 7 October, 2010). occur. Leadership from within faith References 15. McGeough, P. (2009, 29 November). communities is required to reach those 1. Tutu, D. (2010, 12 March). In Africa, a step An unholy alliance of church and state. who are skeptical of human rights backward on human rights. Washington Sydney Morning Herald. Post. 16. Grover, A. (2010). Report of the Special and to win them over with evidence- 2. Human Rights Watch. (2009, 15 October). Rapporteur on the right of everyone to based arguments. Uganda: Anti-homosexuality Bill Threatens the enjoyment of the highest attainable Liberties and Human Rights Defenders. standard of physical and mental health, . There has been a gradual shifting 3. Associated Press. (2010, 12 April). Even Human Rights Council; see: International of position within some churches. after death abuse against gays continues. Service for Human Rights. Council debates Since 2008, at least on paper, the 4. Associated Press. (2010, 29 May). decriminalisation of consensual sexual Catholic Church has been supportive Malawi’s leader pardons gay couple, conduct. 24 August. Available at: http:// orders them freed from prison; still rejects www.ishr.ch (accessed 7 October, 2010). of decriminalisation of homosexual homosexuality. 17. IGLHRC Press Release, United Nations 19 acts. There are of course voices of 5. Research: Kenya in denial over Grants Official Status to US-based reason committed to promoting homosexuals, Saturday Nation, 23 International LGBT Rights Group, 19 July, compassionate, evidence-based HIV December 2009. 2010. 6. Human Rights Watch. (2010, 17 February). 18. UNDP. (2010). Information Note: Global policies within Islamic communities Kenya: Halt anti-gay campaign, protect Commission on HIV and the Law. and within the churches – witness the health workers. Available at: http://www.undp.org/hiv/ remarkable leadership of Desmond 7. Cameron, S., et al. (2010). Global comissiononhivandthelaw (accesed Tutu on these issues. Criminalisation Scan Amsterdam: GNP+. 7 October, 2010). 8. Littauer, D. (2010). Syria’s attack on gay 19. Statement of the Holy See Delegation at It is commendable that Australia people must end. The Guardian, 7 July; the 63rd Session of the General Assembly Massage centres offering gay sex raided. is providing funding to the Global of the United Nations on the Declaration The Star, 22 May. on Human Rights, Sexual Orientation Commission on HIV and the Law, 9. Eds. (2010, 21 January). Homosexuals and Gender Identity, 18 December 2008. along with other national donors, battle medieval by law, Jakarta Post. Available at: http://www.vatican.va/roman_ the Ford Foundation and UNDP. In 10. Liang, J. (2010, April–June). Homophobia curia/secretariat_state/2008/documents/ on the Rise. Inside Indonesia, 100. addition to funding, Australia needs to rc_seg-st_20081218_statement-sexual- 11. Ibid.; Suryakusuma, J. (2010, 5 May). Stop orientation_en.html (accessed 7 October, show leadership in advocating support in the Name of Love. The Jakarta Post. 2010). to the Commission’s approach and 12. PSDN. (2009). HIV/AIDS, men who have findings, in advocating for country sex with men and transgender people John Godwin is a consultant on HIV in the Pacific: Recommendations for an partners to rely on evidence rather and International Development, improved response, PSDN and ACON, 9. based in Sydney. He has over twenty than dogma in their legal and policy 13. UNDP. (2010). High Level Dialogue responses to HIV, and in engaging – Punitive Laws, Human Rights and HIV years experience in the HIV sector in with other donors such as the USA on prevention among men who have sex with Australia and globally, and also has a men in Asia Pacific, 38. policy implications – such as removal background as a legal aid lawyer. 44 | HIV Australia Volume 8, No. 3 continued from page 9

WHAT NEXT FOR PrEP? The iPrEx study is due to report in early 2011. This trial will determine if This was not an efficacy study, meaning daily dosing of Truvada is safe and effective in preventing HIV infection in it was not designed to be able to make high-risk MSM. conclusions about the role of tenofovir HPTN 067 (ADAPT Study) is a Phase II study of the use of Intermittent Truvada in preventing HIV transmission. (daily, vs pre-post, vs bi-weekly), that will start in early 2011 and will include 360 However, there were data presented MSM in South Africa and Thailand. on the seroconversions that took place. Overall there were seven such cases: 5. Cohen, M. (2010, July). ART for one man tested negative at enrolment As van Griensven outlined, based prevention: opportunities and challenges. but was found to be positive prior to on animal models, daily PrEP dosing Paper presented at XVIII International AIDS 11 randomisation; three men on placebo may not be required. An intermittent Conference, Vienna. Abstract WESY0705. 6. Wang, L., Ge, Z., Luo, J., et al. (2010). HIV seroconverted; and another three men dosing strategy is also supported in Transmission Risk Among Serodiscordant in the delayed arms seroconverted a recently published article on a Couples: A Retrospective Study of Former during the nine-month period prior study involving men in Thailand Plasma Donors in Henan, China. Journal of to starting tenofovir or placebo. It is by van Griensven and colleagues, Acquired Immune Deficiency Syndromes, 55(2):232–238 a good sign for the outcome of future which showed that 86% of men had 7. Sullivan, P. (2009, July). Is the reduction efficacy trials that no seroconversions sex on two days per week or less, and of HIV transmission risk while prescribed happened while participants were 65% reported their last sex to have antiretroviral therapy (ARVT) different for 12 taking tenofovir. been planned. men and women? Results from discordant couples in Rwanda and Zambia. Paper The presentation did not include In a subsequent article in The Lancet, presented at 5th IAS Conference on HIV detailed analysis of the behavioural Willard Cates asked if in fact it is Pathogenesis, Treatment and Prevention, Cape Town. Abstract WEAC101. safety results, but it was clear that time to change the way biomedical 13 8. Granich, R., Gilks, C., Dye, C., et al. unprotected anal intercourse did not prevention is conceptualised. (2009). Universal voluntary HIV testing increase among study participants, and Currently, interventions are with immediate antiretroviral therapy as there was a trend towards decreasing compartmentalised by modes of a strategy for elimination of HIV delivery which has in effect created transmission: a mathematical model. risk behaviours over the course of the Lancet, 373(9657):48–57. study – particularly among men in the completely separate fields of research. 9. Hirschel, B. (2010, July). Anti-HIV Drugs immediate tenofovir and placebo arms. He proposes the adoption of the for Prevention. Paper presented at XVIII generic term ‘pre-exposure prophylaxis’, International AIDS Conference, Vienna. Adherence data on two intermittent which could then be broken down Abstract WEPL0101. 10. Lima, V., Johnston, K., Hogg, R., et al. PrEP trials (IAVI E001 and E002) by different modes of delivery from Kenya and Uganda were (2008). Expanded access to highly active – oral, topical (vaginal and rectal) and antiretroviral therapy: a potentially powerful presented as posters in Vienna. injectable. This would create more strategy to curb the growth of the HIV Participants were randomised to one collaboration across the microbicide epidemic. Journal of Infectious Diseases, 198(1):59–67. of four arms: daily Truvada or placebo, and PrEP fields. or intermittent Truvada or placebo 11. van Griensven, G. (2010, July). Potential role of PrEP/PEP for HIV prevention in men (with doses on Mondays and Fridays, References who have sex with men. Paper presented and post-coital doses within two hours 1. Abdool Karim, Q., Abdool Karim,S., at XVIII International AIDS Conference, after sex, not to exceed one dose per Frohlich, L. (2010). Effectiveness and Vienna. Abstract WESY0702. day). Adherence rates were significantly Safety of Tenofovir Gel, an Antiretroviral 12. van Griensven, F., Thienkrua, W., Microbicide, for the Prevention of Sukwicha, W., et al. (2010). Sex frequency higher among discordant couples in HIV Infection in Women. Science, and sex planning among men who have both the daily and intermittent arms, 329(5996):1168–1174. sex with men in Bangkok, Thailand: compared to female sex workers and 2. Montaner, J. (2010, July). Impact of implications for pre- and post-exposure men who have sex with men in these antiretroviral therapy on HIV transmission: prophylaxis against HIV infection. Journal results from a five year HAART coverage of the International AIDS Society, 13(13). same arms. Results also indicated expansion in British Columbia, Canada. Available at: http://www.jiasociety.org/ adherence issues for post-coital Paper presented at XVIII International AIDS content/13/1/13 (accessed 8 October, doses, with self-reports of adherence Conference, Vienna. Abstract WESY0703. 2010). (including reports at study visits and 3. Montaner, J., Lima, V., Barrios, R., et al. 13. Cates, W. (2010). After CAPRISA 004: (2010). Association of highly active time to re-evaluate the HIV lexicon. Lancet, SMS responses), being much higher antiretroviral therapy coverage, population 376(9740):495–496. than rates suggested by data from viral load, and yearly new HIV diagnoses MEMS (medication event monitoring in British Columbia, Canada: a population- systems) which is an electronic pill based study. Lancet, 376(9740):532–539. 4. Garnett, G. (2010, July). Modelling bottle cap that records when the pill potential synergies of PrEP and ART bottle has been opened). Among for prevention. Paper presented at XVIII Dean Murphy works at AFAO in participants in Kenya the difference was International AIDS Conference, Vienna. the areas of HIV education and 26% versus almost 100%. Abstract WESY0704. biomedical prevention. HIV Australia Volume 8, No. 3 | 45 continued from page 28

the Industry Advisory Group and the 12. Barrett, C. (2008). My People. A project The implications of HIV on ageing participation of many WA aged care exploring the experiences of gay, lesbian, also need serious community accommodation providers are acknowledged. bisexual, transgender and intersex seniors engagement. It is hoped the work in aged-care services. Victoria. References 13. McNair, R. and Harrison, J. (2002). of GRAI and the output from this 1. GRAI is a community advocacy group What’s the difference? Health issues research will provide an impetus based in Western Australia, see www.grai. of major concern to gay, lesbian, for action on the part of both the org.au for more details. bisexual, transgender and intersex 2. GRAI: GLBTI Retirement Association Inc. (GLBTI) Victorians.Victorian Government retirement and residential aged-care (2007). Older gay and lesbian people: Department of Human Services. sector and the GLBTI community. Establishing the needs. Perth. Melbourne, Rural and Regional Health and 3. GRAI 2009 Aged Care Services Division, 37–45. The culture that exists within the 4. Meyer, I. and M. Northridge (2007). The 14. Roach, S. (2004). Sexual behaviour of aged-care sector results in a lack of health of sexual minorities: Public health nursing home residents: Staff perceptions understanding of the social history of perspectives on lesbian, gay bisexual and responses. Journal of Advanced and transgender populations. New York, Nursing 48(4): 371–379. GLBTI clients and unique needs of Springer. 15. Barrett, C., Harrison, J., et al. (2009). this group. The SwanCare group in 5. Equality South West (2006). Lifting the lid Permission to speak: Determining Western Australia is the first aged-care on sexuality and ageing. Gay and grey in strategies towards the development of Dorset: For older lesbian and gay people, gay, lesbian, bisexual, transgender and provider to commit to adopting the best Equality South West. intersex friendly aged care agencies in practice guidelines. Many other aged- 6. Meyer, I. and Northridge, M., loc. cit. Victoria. care providers appear open and willing 7. Irwin, L. (2007). Homophobia and 16. Deeks., S. and A. Phillips. (2009). HIV heterosexism: Implications for nursing infection, antiretroviral treatment, ageing to consider how to be more inclusive and nursing practice. Australian Journal of and non-AIDS related morbidity. British of GLBTI clients, however they lack Advanced Nursing 25(1): 70–77. Medical Journal 338(a3172): 288–292. the skills to do so. It is time to push 8. Addis, S., M. Davies, et al. (2009).The health, social care and housing needs of forward with quality education and lesbian, gay, bisexual and transgender training for this sector. older people: A review of the literature. Acknowledgements Health & Social Care in the Community 17(6): 647–658. This research project was supported by 9. Kimmel, D., T. Rose, et al. (2006). Lesbian, Jude Comfort is a researcher at the a Lotterywest Social Research Grant and gay, bisexual and transgender ageing. WA Centre for Health Promotion was a collaborative project involving New York, Columbia University Press, 1. Research. lecturer in the School GRAI and Curtin University’s WA Centre for 10. Ibid. Health Promotion Research, the Centre for 11. Dillman, D. (2007). Mail and internet of Public Health Curtin University Research on Ageing and the Curtin Health surveys: The tailored design method. New and Chair of the Gay Retirement Innovation Research Institute. The input of Jersey, John Wiley & Sons. Association Inc. (GRAI).

continued from page 39

the social aspects of the epidemic, 11–42, 12. Cited in Ibid. UNAIDS Executive Director Michel Sydney: UNSW Press. 13. Ibid. Sidibé visited China and commended 4. Cited in Ibid. 14. Jing, J. & Worth, H. (2009), loc. cit. China’s response, saying, ‘This scale 5. Ibid. 15. Country profile: China, 7, of transformation gives me and many 6. Huang, Y. (2010). Female sex workers www.aidsdatahub.org (accessed in China: their occupational concerns, in 12 September 2010). others hope that China can make Jing, J., & Worth, H., (eds.) HIV in China: 16. See Amon, J. (2010, 11 July). The truth breathtaking strides in other areas of Understanding the social aspects of the of China’s response to HIV/AIDS, Los universal access, if the will is there. And epidemic, 45–65, Sydney: UNSW Press. Angeles Times. I believe it is.’ 17 7. Country profile: China, 4, www. 17. Michel Sidibé commends China’s aidsdatahub.org (accessed 12 September progress in AIDS response, www.unaids. References 2010). org, 24 November 2009 (accessed 1. Ministry of Health of the People’s Republic 8. Ibid. 12 September 2010). of China, China 2010 UNGASS Country 9. Ministry of Health of the People’s Republic Progress Report (2008–2009), 5 of China, China 2010 UNGASS Country 2. Prybylski, D., & Wilson, D. (2007). Progress Report (2008–2009), 22. Overview of the HIV epidemic in Guangxi, 10. Ibid. China. Available at: www.worldbank.org 11. Zhang, Y. (2010). Fears of identity (accessed 12 September 2010). exposure among gay men living with HIV, 3. Jing, J. & Worth, H. (2010). An overview of in Jing, J, & Worth, H. (2010) HIV in China: China’s HIV epidemic, in Jun, J, & Worth, Understanding the social aspects of the Abigail Groves is a freelance writer H., (2010). HIV in China: Understanding epidemic, 117–138, Sydney: UNSW Press. and a former Policy Analyst at AFAO.

46 | HIV Australia Volume 8, No. 3 BOOK REVIEW HIV Treatment and Prevention Technologies in International Perspective

Reviewed by Dean Murphy or regional level. For example, Eric Mykhalovsky examines the complexity This collection of work from several of incorporating prevention within well-known social scientists in the a Canadian organisation that had HIV field has its origins in a seminar historically focused on treatments at the British Sociological Association information. Abdullah and Squire conference in 2007. It has been also provide an interesting account of produced to overcome what the editors scaling up ARV therapy in the Western describe as a curious lack of social Cape in South Africa, suggesting that science engagement with the changing the success of this program is largely technologies used in the response to due to the new construction of ‘HIV the global HIV pandemic. citizenship’ within this province. Given that technologies are the main The chapter on HIV pre-exposure focus of this book it is important prophylaxis (PrEP) by Rosengarten to note that – following the and Michael is a highlight. They tradition of biological politics – here propose a new way of thinking about ‘technologies’ are not just devices PrEP- not as a stable object, distinct and pharmaceuticals but are ‘“hybrid from the human and non-human assemblages” … of knowledges, relations that inform it, but instead practices, habits and material resources as ‘processual’, involving the constant that have particular effects.’ (p. 10). working of biological and social gay men in 1999 and 2000, rather phenomena. Their thought-provoking The book draws heavily on research than in the more recent era of test and analysis liberates clinical trials from in southern Africa and the UK, treat policies and the Swiss Consensus a common conceptualisation as sites and to a lesser extent, North America Statement). of conflict between the researchers and Australia. The contributors break and the researched (p. 170), instead down many of the binaries that Additionally, as Paul Flowers presenting them as technologies that characterise the HIV field, such as argues, the biomedical model has bring together people and drugs in treatment/prevention (Mykhalovsky), provided a ‘palatable way of engaging particular ways (p. 177). researchers/researched (Rosengarten with the global epidemic’ (p. 110) and Michael), risk/responsibility that conveniently overlooks the Although the title of this book (Race), and pre-/post-antiretroviral differences in economic and social may imply that it will cover all new (ARV) therapy (Davis). circumstances. He also examines how biomedical prevention strategies, this ‘biomedical narrative of HIV’ circumcision is mentioned only briefly Not surprisingly, many of the chapters (and its subsequent normalisation) and discussion of HIV vaccine and focus on HIV prevention in the post- has overshadowed psychosocial issues microbicide development is entirely ARV era. Davis, in particular, examines (p. 109). Interestingly, stigma absent. Overall though, the book this ‘watershed narrative’, which surrounding HIV does not seem to is a useful resource, particularly for positions ARV therapy as transforming have diminished despite treatments those interested in thinking about the epidemic, concluding that this advances and a new biomedical HIV prevention beyond mere viral view is dependent on a particular understanding of the virus. containment and, instead, as an ordering of the relationship between arrangement of practices, expertise, treatment, prevention and ethical The fascinating chapter by Race ethics and apparatuses. citizenship. Prior to the mid-1990s, the examines ‘barebacking’ as a technology absence of treatment gave prevention in its own right. Race makes an HIV Treatment and Prevention its ‘value and urgency, but also tied it interesting comparison between Technologies in International Perspective closely to the failure and success of barebacking – as a transgressive attack Edited by Mark Davis and effective treatment.’ (p. 130). This is on ‘good citizenship’, as defined under Corinne Squire seen most starkly in the discourses of the imperatives of HIV prevention – Published by Palgrave Macmillan, 2010 disinhibition and treatments optimism and the later discovery and promotion found in the post-ARV-therapy era. of ‘serosorting’. Dean Murphy works at AFAO in (It should be noted that this chapter is Several chapters examine the the areas of HIV education and biomedical prevention. based on interviews with HIV-positive biopolitics of treatment at a local

HIV Australia Volume 8, No. 3 | 47 WEB WATCH www.thebody.com

By Finn O’Keefe thebody.com is an HIV information website managed by Health Central Network Inc, a New York based organisation that provides medical information through more than 35 different sites, serving over 16 million visitors each month. Theirraison users to better connect with the stories AIDS web gallery’ which displays a d’être is to provide access to medical provided. The multimedia content gorgeous selection of photographic information which can assist people has the added benefit of providing works. These photos may have more ‘to take control of their health and increased accessibility for those who to do with artistic expression than well-being.’1 have difficulty accessing text-based health promotion, but the selection materials. First person narratives are provides a strong message of support thebody.com is Health Central’s HIV used here to great effect. This keeps and empowerment. ‘HIV on Screen’ project, and promotes itself as ‘the the tone direct, reassuring and frank, is dedicated to promoting films and number one online resource for employing vernacular language. documentaries that explore HIV- news and information about HIV/ 2 For instance: related themes and currently showcases AIDS’. Its four objectives are: to ‘Just diagnosed? I would definitely a US-made documentary The other city, reduce barriers between patients and say, first of all, take a deep breath. with a link to the film’s trailer and an clinicians; to ‘demystify’ HIV/AIDS Don’t freak out too much. There’s a lot interview with the filmmakers. These and treatments; to ‘improve quality of of information out there.’ points of difference in the site’s focus life’ for people living with HIV; and ( Jack Mackenroth, New York City, are refreshing. to ‘foster community through human 4 3 diagnosed in 1990). connection’. thebody.com achieves these One criticism of the site is that while objectives admirably and, as a result, is The site provides a variety of other the news it presents is global in its a comprehensive portal to educational resources, including: ‘AIDS activist scope, much of the other material material about HIV and other central’, which covers global advocacy on offer is very US-centric. It would resources for people living with HIV. initiatives; and ‘HIV tools you can use’, be good to see this broadened out which includes a health tracker to include more coverage of content The home page includes links to where users can track their viral load, from outside of the US, thus better essential HIV information and support CD4 count and other statistics. catering for the site’s presumably materials for those newly diagnosed. There is also the facility for site large international audience. Overall Topics include: ‘what is HIV?’, ‘HIV visitors to direct questions to ‘leading though, thebody.com is an engaging testing 101’, ‘HIV medications’ experts’ and to communicate with and informative gateway to HIV ‘side effects’ and ‘crazy HIV myths’. other users of the site. information, and presents a different These are all housed within the range of information to many of An extensive array of breaking HIV ‘just diagnosed resource centre’. The its peers. information within this section covers news is provided through the ’HIV/ References a lot of technical ground, but manages AIDS news room’. A prominent 1. http://www.healthcentral.com/about/ to employ language that remains clear, rotating banner on the homepage (accessed 27 September, 2010). accessible and friendly throughout. displays four topic areas currently 2. Ibid. There is also a second website, The medical information is balanced available, illustrating the diversity of thebodyPRO.com, aimed at healthcare by first person narratives from people issues covered throughout the site. professionals 3. http://www.thebody.com/content/ sharing their experiences of living The topics currently highlighted are art52962.html (accessed 27 September, with HIV. Resources include a photo ‘what the heck are microbicides?’, 2010) board which links to people recounting ‘HIV and Islam’ (in the US context), 4. Ibid., content/art49985.html (accessed their own stories about coping with ‘men of color’ and research presented at 27 September, 2010) positive diagnosis, and their personal ‘ICAAC 2010’. perspectives on living with the virus. Where thebody.com diverts from many Stories are provided using a mixture of other HIV-focused websites, is in its Finn O’Keefe is Communications text, audio and video. This media-rich coverage of HIV and the arts. The Officer at AFAO and an editor of experience adds warmth and allows home page includes a link to a ‘Visual HIV Australia.

48 | HIV Australia Volume 8, No. 3 TREATMENT Patients who are taking antiretroviral However, treatment with tenofovir drugs in the UK and similar countries was not associated with any increase in BRIEFS are recommended to have their kidney the risk of chronic kidney disease, or function monitored at regular intervals. of end-stage kidney failure requiring However, such monitoring is impractical long-term dialysis. Nor were patients and unaffordable in many poorer taking tenofovir more likely to have countries. Therefore, to gain a better protein in their urine. understanding of the safety of treatment Tenofovir treatment impairs ‘Our systematic review suggests that with tenofovir investigators performed the risk of clinically relevant renal kidney function, but clinical a systematic review and meta-analysis significance limited toxicity due to TDF is relatively low, of studies reporting on kidney function at least during the short-term’, the reatment with tenofovir has in patients taking the drug. They also investigators note. Nevertheless, they an adverse impact on kidney monitored the effect of the drug on note that dozens of cases of tenofovir- function,T but the clinical significance of bone metabolism, as there is some associated kidney dysfunction have this is modest, according to the results evidence that therapy with tenofovir been reported. The researchers provide of a systematic review and meta- may reduce bone mineral density and a number of explanations for the analysis conducted by an international increase the risk of fractures. differences between the findings of team of investigators and published in A total of 17 studies were identified their meta-analysis and the outcomes the September 1st edition of Clinical by the investigators. The design of seen in routine practice: ■ Infectious Diseases. these studies varied. Nine were More sensitive testing of kidney The investigators looked at the randomised controlled trials, five function was used to diagnose the results of 17 studies involving a total of which were double-blinded. cases seen in ‘real world’ settings. ■ of 11,000 patients. All the studies Seven studies gathered prospective, Many of the cases seen in clinical compared outcomes in patients taking observational data, and one study used practice involved individuals who tenofovir-containing regimens to prospectively collected information were also taking ddI (didanosine, outcomes observed in patients whose from an adverse events register. Videx, Videx EC) or a ritonavir- HIV treatment did not include this A total of 10,889 patients were boosted protease inhibitor. By drug. Loss of kidney function was recruited to these studies. The contrast, most of the patients significantly greater amongst patients individual sample sizes ranged from in the studies were taking an who took a combination of drugs that 49 to 3439. The median duration of NNRTI and the use of ddI was included tenofovir. In addition, those follow-up was 48 weeks. scrupulously avoided. ■ taking tenofovir were more likely to Many case reports involve older Randomised controlled trials were develop kidney disease. However, the patients, those with advanced more likely to find that tenofovir had investigators comment: ‘Although our HIV disease, and individuals an adverse impact on kidney function. review identified a significant loss of with mild kidney dysfunction at There was some evidence that patients renal function associated with TDF baseline. Such individuals would be who had experience of antiretroviral [tenofovir] use, the clinical magnitude excluded from clinical trials. therapy were more likely to experience of this effect was modest.’ ‘Our findings do not support the need a loss of kidney function due to to restrict TDF use in jurisdictions Tenofovir (Viread, also in the tenofovir treatment, compared to where regular monitoring of renal combination pills Truvada and Atripla) patients starting antiretroviral drugs function … is difficult or impractical’, is a widely-used antiretroviral drug for the first time. in both industrialised and resource- conclude the investigators. Studies that were sponsored by drug limited settings. The clinical trials that Reference companies were slightly less likely formed the basis of the drug’s formal Cooper, R., et al. (2010). Systematic review to find an association between approval showed that it was very safe. and meta-analysis: renal safety of tenofovir Nevertheless, after its licensing, case tenofovir treatment and loss of kidney disoproxil fumarate in HIV-infected patients. reports were published showing that function than was research funded Clin Infect Dis, 51: 496–505. from other sources. some patients treated with the drug — Michael Carter, Aidsmap had developed kidney dysfunction or Eight studies reported on the incidence disease. Moreover, several observational of kidney disease. There was a small, cohort studies have founded that but significant, increase in the risk approximately 1% of tenofovir-treated of acute renal failure for patients patients per year develop such severe taking tenofovir (difference with kidney dysfunction that they cease patients taking an alternative therapy with the drug. antiretroviral = 0.7%). continued overleaf

HIV Australia Volume 8, No. 3 | 49 continued from previous page

People with HIV with higher increases in influenza-specific vulnerable to this strain of flu because CD4 counts should not miss CD4 cell counts were observed in they lacked the protective antibodies seasonal flu jabs 92% of individuals. that are developed from contact with earlier strains of flu. IV-positive patients with a Amongst HIV-positive patients with CD4 cell count below 350 well-preserved immunity (a CD4 ‘These preliminary data should trigger cells/mmH 3 have an impaired immune cell count above 350 cells/mm3), the future research aiming to understand response to the seasonal influenza (flu) administration of the vaccine lead to the molecular basis of the observed vaccine, Swiss investigators report in significant increases in levels of flu- lack of IgM-production’, recommend the September 10th edition of AIDS. specific IgM and IgG. However, only the investigators. 64% of patients had an increase in their They recommend that all HIV- The findings of the study also have flu-specific CD4 cell count. positive patients should have an annual significance for clinical practice as influenza vaccine to help them to A poor response to the vaccine was they ‘lend support to strictly enacting establish flu-specific memory immune seen in the HIV-positive patients annual influenza-vaccination in all cells, the formation of which can be whose CD4 cell count was below 350 HIV-infected individuals regardless of difficult after the immune system cells/mm3. No significant increase in their CD4+ T-cell count.’ suffers serious damage. influenza-specific IgM antibody levels These findings, which broadly The study was undertaken because were seen, and only two patients had correspond with findings from a investigators from Basel wished any IgM response at all. Moreover, sample of US patients showing that to assess responses to the seasonal only 44% of patients had an increase in lack of response to H1N1 vaccine their influenza-specific CD4 cell count. influenza vaccine in HIV-positive was associated with a low CD4 count, However, a significant increase in levels patients. Blood samples were therefore suggest that people with HIV with of post-vaccination influenza-specific taken from 24 HIV-positive patients higher CD4 counts may derive the IgG was observed. and 31 HIV-negative controls greatest benefit from current influenza immediately before administration of ‘Increasing levels of IgG in this vaccines, and that more research is the seasonal flu vaccine in 2007–2008, study group most likely reflects a needed to determine how to improve and again approximately 30 days memory response’, comment the influenza vaccine responses in people later. The production of two forms of investigators. They believe that this with low CD4 counts. influenza antibodies – IgM and IgG finding is important and ‘provides an – and levels of flu-specific CD4 cells immunologic rationale supporting the References were measured. recommendation of annual influenza Fritz, S., et al. (2010). Virosomal influenza- vaccine induced immunity in HIV-infected vaccinations throughout the course of All the HIV-positive patients had been individuals with high versus low CD4+ T-cell HIV infection.’ taking antiretroviral therapy for at counts: clues towards a rational vaccination strategy. AIDS, 24: 2287–90. least three months and had a viral load Such vaccinations when a patient’s below 200 copies/ml. immune system is intact build up — Michael Carter, Aidsmap ‘broad and long-lasting’ B-cell memory. In HIV-negative individuals, median levels of influenza-specific IgM and The importance of such memory IgG increased significantly after the cells was shown in the recent H1N1 receipt of the vaccine. In addition, pandemic. Children were especially

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October January 2011

13–16 10–11 3rd Botswana International HIV Conference 1st International Workshop on HIV Gaborone, Botswana and Women www.botshiv.org.bw Washington DC, USA http://www.virology-education.com 18–20 19–21 Australasian Sexual Health Conference 14th Bangkok International Symposium Sydney, Australia on HIV Medicine http://www.sexualhealthconference.com.au Bangkok, Thailand 20–22 http://www.hivnat.org/bangkoksymposium ASHM Australasian HIV/AIDS Conference 2010 February (22nd Annual Conference for the Australasian Society for HIV Medicine) 5–6 Sydney, Australia India – International Pediatric http://www.hivaidsconference.com.au AIDS Conference Mysore, Karnataka, India November http://www.ind-ipac.com

4–6 27–2 March 12th International Workshop on Adverse Drug 18th Conference on Retroviruses and Reactions and Co-Morbidities in HIV Opportunistic Infections (CROI 2011) London, United Kingdom Boston, US http://www.intmedpress.com/lipodystrophy http://retroconference.org/2011

7–9 March Antivirals Congress 20–25 Amsterdam, Netherlands Keystone Symposia: http://www.antivirals.elsevier.com HIV Evolution, Genomics, and Pathogenesis; and 17–18 Protection from HIV: Targeted Intervention Tonkin’s Indigenous Health Care Delivery Strategies Conference Whistler, British Columbia, Canada Brisbane, Australia http://www.keystonesymposia.org/11X7 http://www.healthinfonet.ecu.edu.au/health-resources/ http://www.keystonesymposia.org/11X8 Diary conferences?cid=605