CRITICAL STEPS TOWARDS ADDRESSING HIV IN AUSTRALIA. Perspectives and Priorities for Australia s HIV Goals

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1 CRITICAL STEPS TOWARDS ADDRESSING HIV IN AUSTRALIA Perspectives and Priorities for Australia s HIV Goals

2 ACKNOWLEDGEMENTS would like to thank people living with HIV who participated and representatives from the following organisations: AIDS Action Council of the ACT AIDS Council of New South Wales Australian Federation of AIDS Organisations Australian Research Centre in Sex Health and Society Blood Borne Virus & Sexually Transmissible Infections Section, Office of Health Protection Australian Government Department of Health Infectious Disease Division of Public Health, Government of Western Australia Department of Health Kirby Institute for Infection and Immunity in Society, University of NSW Living Positive Victoria National Association of People With HIV Australia Population Health Programs, The Centre for Public Health, NSW Health Positive Women Victoria The Prevention, Population, Primary and Community Health Branch of the Victorian Department of Health and Human Services Queensland Positive People Sexually Transmissible Infection and Blood Borne Virus Section, Communicable Disease Control Branch, Department for Health and Ageing, Government of South Australia Victorian AIDS Council Western Australian AIDS Council

3 FOREWORD provides a unique perspective on the current state of HIV in Australia, and is a product of close consultation with community representatives, community-based healthcare professionals and people living with HIV. The report highlights that we have made significant progress toward our shared goals of virtually eliminating new HIV transmissions, and improving the lives of those living with HIV. Yet it also highlights that there remains much work to do. Community perspectives on barriers to testing, diagnosis and treatment such as health literacy, cost, and stigma and discrimination, are explored. The report also highlights challenges faced by culturally and linguistically diverse (CALD) groups and people living in regional areas who may not recognise their risk of contracting HIV. Although the report doesn t directly address the importance of research in the HIV response, it highlights the importance of clearly communicating research findings to ensure people living with HIV access care which is underpinned by the best scientific evidence. For example, the report draws attention to apparent gaps in understanding the benefit of starting antiretroviral therapy as soon as possible after diagnosis. Early diagnosis and commencing treatment as early as possible are key determinants of long-term health outcomes. Overall, the perspectives, issues and recommendations in this report will provide an important contribution to our ongoing discussion to ensure that our strategy to prevent, care and treat HIV in Australia is always patient centred and has the very best outcomes. Professor Sharon R Lewin, FRACP, PhD, FAAHMS Director, The Peter Doherty Institute for Infection and Immunity, The University of Melbourne Professor of Medicine, The University of Melbourne Consultant Physician and Adjunct Professor, Department of Infectious Diseases, Alfred Hospital and Monash University, Melbourne, Australia

4 FOREWORD exemplifies how collaboration across industry, community, policy and research can make a huge difference in our understanding of how to best respond to HIV in Australia and sets a brilliant example of best practice in civil society engagement between industry, community and healthcare providers. This report does more than just identify the challenges we face as a nation towards the virtual elimination of HIV in Australia. It reaches into the future to pose the questions and possible solutions for us to consider while our researchers bring us ever closer to a cure for HIV. As we reach for the global targets of 90:90:90 we cannot lose sight of the remaining 10% who often live on the margins of society in vulnerable circumstances and with challenges we have to identify now if we want to ensure that no one gets left behind. All too often these strategic policy reports are informed predominantly by published literature, the epidemiology and formal case studies, for all their persuasiveness, such an approach will be limited in its focus and may only ever provide the outline of the true picture of HIV in Australia. What makes this report stand out is that it has been informed from its conception with the premise that the solutions to the challenges we face in addressing the impact of HIV best resides in the wisdom of the affected communities. ViiV Healthcare has worked hard to ensure that the community of people living with HIV, healthcare workers and policy makers have all been heard, and given a voice. It is this meaningful involvement that enhances our collective understanding of the complexity of the challenges, and the further efforts that will be required. We are at a crossroads of the HIV epidemic in Australia. What we thought we knew and the communities we strove to support are going to change rapidly with the advent of new biomedical prevention technologies, new therapies and delivery mechanisms, and the improvement in our understanding of how HIV intersects with our bodies as we age. Furthermore, how the stigma of HIV continues to compromise our quality of life and our expectations of wellness remains a major challenge that must be met head on. This report provides a remarkable reflection of where we are at in responding to HIV in Australia today and the collective challenges we are still yet to face. Brent Allan Chief Executive Officer Living Positive Victoria

5 FOREWORD Perspectives and Priorities for Australia s HIV Goals is a global research and development pharmaceutical company 100% dedicated to HIV. While we work with researchers, clinicians, community and government to provide antiretroviral medicines for HIV we are always looking for ways to improve the lives of people living with, or at risk of, HIV beyond viral suppression. This means we are highly motivated to contribute our thinking and expertise to achieve the goals described in Australia s National HIV Strategy. Australia has been an exemplar country in its response to HIV. Adoption of advancements in diagnosis, treatment and prevention over the past 30 years has resulted in the possibility of virtual elimination of transmission and substantial reduction of the impact on those living with HIV in Australia. Successive Australian State and Federal Governments have provided strong leadership in meeting the HIV challenge by enabling an effective response through the healthcare system and ongoing partnership with an exceptionally capable community. We are proud of our world class medical scientists and social researchers who have contributed so much and will continue to do so. It is possible that Australia could be the first country to announce it has virtually ended the transmission and fully addressed the impact of those living with HIV. But like all great challenges the effort to finally achieve such a crucial milestone must be sustained now more than ever. Otherwise the potential of ending HIV will remain elusive. While HIV can now be managed as a chronic condition, there remains a significant impact on those living with the infection and there has been a steady rate of new infections for some years. In this context decided to undertake a structured investigation to provide a unique view of the Australian response to inform thinking on future actions that need to be taken. We called our project The Listening Tour. It gathered information and perspectives from the communities of people living with HIV; lesbian, gay, bisexual, transgender, queer and intersex; healthcare professionals, and representatives of the HIV community peak bodies. The results are powerful and provide a valuable tool to assist governments and all HIV stakeholders to identify current and future policy challenges and opportunities. This report presents the findings of The Listening Tour together with our recommendations for inclusion in a future national HIV strategy. We believe these recommendations will be important in demonstrating ongoing global leadership by Australia. readily acknowledges that not all issues crucial to the further development of a national strategy are addressed in this document. For example, we have world leading medical research in HIV that requires ongoing funding. There is also need to address HIV-related law reform. These will require further consideration, amongst others. We look for further opportunities to outline our position on such issues in due course. Importantly, this report highlights that despite world leading indicators, most notably Australia s achievements against the UNAIDS i 90:90:90 goals, continued focus, investment and collaboration will be required. On behalf of I look forward to ongoing engagement on the issues canvassed in this report. Michael Grant, Country Manager,, Australia i Joint United Nations Programme on HIV/AIDS

6 CONTENTS EXECUTIVE SUMMARY 1 HIV IN THE AUSTRALIAN CONTEXT 2 THE ViiV HEALTHCARE LISTENING TOUR 2 KEY FINDINGS 3 RECOMMENDATIONS 4 BACKGROUND 5 CURRENT STATE OF HEALTH AND WELL-BEING OF PEOPLE LIVING WITH HIV 6 THE LISTENING TOUR 8 DETAILED FINDINGS 10 TESTING AND DIAGNOSIS 11 BARRIERS TO TREATMENT AND CARE 13 STIGMA, DISCRIMINATION, AND QUALITY OF LIFE 18 PREVENTION THROUGH ACCESS TO BIOMEDICAL INTERVENTIONS 20 PARTNERSHIP 24 CONCLUSION 28 GLOSSARY 29 ABBREVIATIONS 31 REFERENCES 32 ABOUT ViiV HEALTHCARE 34

7 EXECUTIVE SUMMARY

8 EXECUTIVE SUMMARY HIV in the Australian Context In 2017, we are at a critical moment in our collective response to the HIV epidemic in Australia. Twenty years after the introduction of highly active antiretroviral therapy (HAART) for HIV, people are now living long-term with the infection. HIV has evolved into a chronic, but manageable disease. The focus of intervention now needs to include measures to improve the quality of life (QOL) of positive people. While continuing to contribute to treatment improvements, (ViiV) and our partners are actively exploring new approaches to support people living with HIV (PLHIV) to attain the same health and well-being expected by all Australians. The impending expiry of the Seventh National HIV Strategy provides an opportunity to build upon the current strategic framework to address the needs of people at risk of and living with HIV, especially with a focus on the most vulnerable. Australia has committed to the Joint United Nations Programme on HIV/AIDS (UNAIDS) 90:90:90 treatment targets to have 90% of people with HIV diagnosed, 90% of those diagnosed on antiretroviral therapy (ART), and 90% of those on ART with an undetectable viral load. 1 We consider Australia has done well on this ambition and the target is attainable. However, even if this is achieved, it would still mean that more than one in four PLHIV would not be virally suppressed by There are many aspects of the journey of PLHIV that have not been fully addressed. Significant numbers of diagnoses are late and living with HIV is associated with issues that affect well-being beyond medical impact of the virus itself. We will need to go beyond 90:90:90 if we are to achieve the goals of the current National HIV Strategy: virtual elimination of HIV transmission by 2020; reduction of morbidity and mortality caused by HIV; and minimisation of the personal and social impact of HIV. The Listening Tour ViiV is a global research and development (R&D) pharmaceutical company, 100% dedicated to HIV. Given that focus, we believe that we have a responsibility to contribute to the ongoing response to HIV and are committed to working in partnership with all stakeholders to achieve the best outcomes. As part of this commitment, we decided to investigate how close Australia is to achieving the goals of the Seventh National HIV Strategy and explore what is needed to meet these goals. Our investigation, launched in 2016, took the form of a unique market research project, titled The Listening Tour, which collected primary data from these sources: Your HIV Journey survey of 269 PLHIV. 2 Surveys with 100 members from lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) communities. 3 Surveys with 28 healthcare professionals (HCPs). 4 Qualitative interviews with 20 representatives of the HIV partnership (HIV community health sector consultation), including national and state-based community-based organisations, researchers, and State and Federal Health Departments. 5 It is hoped that the findings from The Listening Tour, outlined in this report, will contribute to the ongoing collaborative response to HIV in Australia by highlighting many of the current challenges and opportunities facing the community. 2

9 EXECUTIVE SUMMARY Key Findings The Listening Tour highlighted that, despite recent improvements in care for people living with or at risk of HIV in Australia, there remain key challenges and opportunities. These include: There is a strong call for the Federal Government to maintain a standalone national HIV strategy. In considering the Eighth National HIV Strategy, respondents highlighted the need for Government to clearly outline accountabilities and leadership between Federal, State, and Territory jurisdictions - in addition to undertaking a rigorous and transparent consultation process. There remains an increasing variability in testing take up rates, driven by lack of access to culturally appropriate rapid testing centres, especially outside of metropolitan centres. This is evidenced by data showing that 29% of people diagnosed with HIV in 2015 were diagnosed late. 10 There remain unintended, and in some cases systematic, barriers to treatment and care; including delays in commencing treatment, limited health literacy, copayments for medicine and consultations, ineligibility for Medicare for some populations, lack of/ or inequitable subsidy across Australia for certain treatments, and lack of access to treatment centres and specialist healthcare providers, especially in rural areas. Stigma and discrimination remains an issue, especially in new and emerging communities, despite this being a continuing priority in the Seventh National HIV Strategy. Stigma and discrimination often delay or prevent people from seeking diagnosis, treatment, and ongoing care. 75% of PLHIV in our study felt they had to hide their status and 88% of HCPs thought that disclosure of status was an issue for patients. 2,4 There is a lack of, or inequitable access to, some preventative biomedical interventions. New approaches to prevention need to combine improved access to pre-exposure prophylaxis (PrEP), postexposure prophylaxis (PEP), and treatment as prevention (TasP) supplemented by efforts to increase health literacy especially in vulnerable communities. There has been either reduction or withdrawal of funding for community organisations in several jurisdictions. This has limited the capacity for community to deliver programs and services and advocate for key issues for people with or at risk of HIV. Current funding models tend to favour the provision of services over policy development and advocacy, limiting capacity to critically contribute to policy and program development. As a country, we have reached a fundamental point, where ending the HIV epidemic is a near possibility; one key goal in the current National HIV Strategy is to virtually end HIV transmissions by Despite much progress, there are challenges we need to resolve to ensure this objective is achieved. In this context ViiV believes that the findings in this report will inform the development of the next phases of the response to HIV. This report has put forward 10 recommendations which we trust will inform policy makers and stakeholders as they work towards the development of the Eighth National HIV Strategy. 3

10 EXECUTIVE SUMMARY Recommendations There is an opportunity for collaboration in the following areas: TESTING AND DIAGNOSIS 1. Implement targeted HCP education strategies to address HCP knowledge gaps regarding HIV risk factors, diagnosis, benefits of testing and early treatment. 2. Improve understanding of risk, and accessibility to testing, for people at risk of HIV (especially those living in rural or remote areas or in culturally and linguistically diverse (CALD) communities) by providing peer-to-peer education and facilitating availability of innovative testing technology. BARRIERS TO TREATMENT AND CARE 3. Implement strategies that mitigate the impact of time, distance, co-morbidities, Medicare ineligibility, and out-of-pocket costs to achieve optimum treatment rates. 4. Increase access to educational resources to improve HIV health literacy and community understanding of the benefits of early treatment. STIGMA, DISCRIMINATION, AND QUALITY OF LIFE 5. Augment focus on issues relating HIV QOL, stigma, discrimination; 6 and implement objective measures of QOL to track the progress of formal programs. 6. Maintain continuing education in the health and aged care sector to address the risk of stigmatisation and its potential impact on people seeking diagnosis, treatment, and ongoing care. PREVENTION THROUGH ACCESS TO BIOMEDICAL INTERVENTIONS 7. Improve access to biomedical prevention by: Making access to PrEP, PEP, and TasP more equitable and less dependent on where one lives, ability to pay or wait. Ensuring that innovative HIV medicines continue to be made available on the Pharmaceutical Benefits Scheme (PBS) by addressing potential barriers for new treatment that can arise through unintended consequences of reimbursement policy. PARTNERSHIP 8. Develop an Eighth National HIV Strategy with a clear implementation plan. It should be endorsed by all stakeholders and have an additional focus on the needs of minority populations. 9. Ensure community-based organisations are able to continue to meet community needs and expectations, and assist in delivering the goals of the National HIV Strategy, by: Ceasing disinvestment in the current community-based organisations. Considering optimal long-term funding models for community-based organisations to ensure services remain sustainable, diverse and non-duplicative. 10. Focus resources on training new HCP workforce entrants, given the generational workforce shift currently taking place. 4

11 BACKGROUND

12 BACKGROUND Current State of Health and Well-being of People Living with HIV Australia has made significant progress in improving the health and well-being of people living with HIV (PLHIV), however, there is still significant work to be done to achieve the ambitious goals set out in the Seventh National HIV Strategy. These goals, of the Seventh National HIV Strategy, are: Achieve virtual elimination of HIV transmission by Reduce morbidity and mortality caused by HIV. Minimise the personal and social impact of HIV. AIDS-related deaths and AIDS-defining conditions are no longer common in Australia. 9 While chronic, HIV is now a manageable disease; with the appropriate treatment, people who contract HIV can expect to live, on average, as long as those without HIV. 7,8 That said, it is important to note that infection with HIV remains a serious medical condition and places individuals at risk of co-morbidities as they age. 9,14 It is estimated that, at the end of 2015, 31% of PLHIV in Australia were not virally suppressed and of those: 34% were undiagnosed, 15% were diagnosed but not in care, 32% were in care but not on antiretroviral therapy (ART), and 19% were on ART but not virally suppressed. 9 There has been a steady rate of around 1,000 new confirmed infections per year in the past 10 years. 9 People living with HIV in Australia in % were not virally suppressed of those 34% were undiagnosed 32% were in care but not on ART 15% were diagnosed but not in care 19% were on ART but not virally suppressed Around 1000 new infections per year 9 (1025 new infections in 2015) Over half (55.6%) of respondents in Australia s largest survey of PLHIV conducted in 2016, HIV Futures 8, 10 rated their health as good or excellent. The majority of participants (60.4%) reported well-being to be good or excellent. 55.6% rated Health Good Excellent 60.4% rated General Well-being Good Excellent 6

13 BACKGROUND Despite improvements in virologic outcomes at a population level, the HIV community health sector consultation 5 and a substantial body of literature 11,12, show that HIV continues to adversely affect the well-being and quality of life (QOL) of many individuals; it remains very challenging for them. Given this, improving the QOL and well-being of PLHIV must be a priority. It is crucial that HIV-positive individuals have access to the right HIV treatment to meet their individual needs. The potential added benefit will be maintenance of viral suppression through improved adherence, reducing the risk of transmission. The Listening Tour clearly indicates that good QOL goes beyond treatment of the virus. There are social realities about being HIV positive, esoteric, emotional, psychological realities stuff you would never have even thought about like having to research whether or not the country you are travelling to is safe as a positive person or the effect that a shift in your identity has, of re-establishing how you see yourself, and disclosing to others, which is as profound for many as coming out as gay. [Representative from Living Positive Victoria, HIV community health sector consultation 5 ] Among HIV Futures 8 survey respondents 10 Prevalence of mental health issues among PLHIV IS 10,13 HIGH diagnosed with a mental 52% health condition diagnosed with 42% depression diagnosed with 28% anxiety In addition to the HIV Futures 8 findings, a recent British study found that men with HIV are twice as likely to commit suicide compared to those who do not have HIV. While suicide occurred in people on and off treatment, the study showed that the suicide rate of men recently diagnosed was five times that of the general population. 33,34 7

14 BACKGROUND THE LISTENING TOUR The Listening Tour was commissioned by Australia (ViiV) and consisted of three quantitative surveys and one qualitative survey conducted over a six-month period in These surveys were: Your HIV Journey 269 PLHIV 2 (conducted June-July 2016) 28 Healthcare professionals (HCPs) (conducted July-August 2016) Members from lesbian, gay, bisexual, transgender, queer and intersex (LGBTQI) communities 3 (conducted July-August 2016) 20 Qualitative interviews representatives of the HIV partnership, including national and state-based community-based organisations, researchers, and State and Federal Health Departments 5 (conducted October-November 2016) For the qualitative interviews with the HIV community health sector 5, ViiV, in consultation with Living Positive Victoria, selected 20 participants working in the areas of research and policy in the Australian HIV sector, as well as representatives from community organisations across Australia. The interviews asked specific questions to provide a basis for further investigation and questioning; the approximate interview time was between minutes. All data provided by the interview participants was recorded and summarised by the lead investigator. All other surveys in the tour were anonymous and cross-sectional in terms of demographics and sample; the LGBTQI and HCP surveys were undertaken by Forethought 9 Market Research, and the PLHIV survey was undertaken in collaboration with Living Positive Victoria. To qualify for the LGBTQI survey, respondents had to identify as part of the LGBTQI community, not currently HIV-positive, and over the age of 18. Demographic data was obtained including age, gender, gender identity, sexuality, and home state. Apart from the Indigenous status and location of respondents, the survey captured little information about the cultural or socio-economic background of respondents. While online surveys offer a way to collect health information from PLHIV living in remote or regional areas, in this instance, it limited where the survey was promoted and presented a barrier to those who cannot access the internet. 8

15 BACKGROUND The research was conducted at a single point of time and did not include information regarding treatment. The Listening Tour data indicates that the priorities for improving health and QOL for PLHIV are: Addressing systemic and individual barriers to testing, commencing treatment and staying on treatment, and linked to care. Improving outcomes and/or expanding treatment options for those on treatment, who do not have an undetectable viral load. Improving QOL for PLHIV. Minimising HIV transmission through TasP, PrEP, and PEP. The Listening Tour participants indicated that the health, well-being, and QOL of people living with, or at risk of, HIV infection continue to be affected by five key factors: 1. Inconsistent accessibility to testing, time required for testing and lack of rapid testing centres that are culturally and linguistically diverse (CALD)-appropriate, especially outside of metropolitan centres. 2. Barriers to treatment and care, including delayed access to medication, limited health literacy, cost of Pharmaceutical Benefits Scheme (PBS) co-payments and lack of access to treatment centres and specialist providers, especially in rural areas. 3. Stigma and discrimination 75% of PLHIV felt they had to hide their status and 88% of HCPs thought that disclosure of status was an issue for patients. 2,4 While reducing stigma and discrimination has been a priority in successive national HIV strategies, with some progress, there is clearly more work to be done, especially in diverse communities. 4. Lack of access to biomedical interventions new approaches to prevention need to combine improved awareness and access to PrEP, PEP, and TasP with more focused efforts for health literacy and education generally, and in vulnerable communities. 5. Reduced funding for community organisations in several jurisdictions, has limited their capacity to deliver programs and services, and to advocate for people with, or at risk of, HIV. Current funding models tend to favour the provision of services over policy development and advocacy, limiting capacity to critically contribute to policy and program development. In the next section of this paper, each of these factors are discussed in more detail, supported by findings from The Listening Tour and other relevant evidence. 9

16 Detail Findings DETAILED FINDINGS 10

17 DETAILED FINDINGS TESTING AND DIAGNOSIS RECOMMENDATIONS 1. Implement targeted healthcare professional (HCP) education strategies to address HCP knowledge gaps regarding HIV risk factors, diagnosis, benefits of testing and early treatment. 2. Improve understanding of risk, and accessibility to testing, for people at risk of HIV (especially those living in rural or remote areas or in culturally and linguistically diverse (CALD) communities) by providing peer-to-peer education and facilitating availability of innovative testing technology. Reducing the number of people with HIV who are unaware of their HIV status is fundamental to reducing transmission and improving the long-term health of PLHIV. The Listening Tour findings demonstrates belief that an early diagnosis makes a substantial difference in individual well-being and delivers benefit in public health by reducing infectivity and transmission through TasP; this is discussed in more detail further in the document. While prevention is currently a key focus, testing and diagnosis remain important because both facilitate entry into care, including counselling and assessing suitability for treatment. Diagnosis and treatment early in infection have been demonstrated to have a substantial positive effect on morbidity and mortality associated with HIV, while late diagnosis is associated with considerably poorer outcomes. 14,17 There remain significant barriers to treatment and testing. 10 It is widely agreed that access to regular testing is sub-optimal for many in Australia, 15 with 29% of LGBTQI community survey respondents reporting barriers to testing, and 73% of HCP respondents agreeing there are barriers to early testing and diagnosis. 3,4 Barriers to testing, and stigma and discrimination, often lead to late diagnosis; 29% of diagnoses in 2015 were classified as late. 9 The Listening Tour identifies a range of issues and barriers that contribute to variable access, and uptake of, testing and thus diagnosis. 11

18 TESTING AND DIAGNOSIS Geographic location: 77.8% of all LGBTQI respondents agreed that there is adequate access to HIV testing in their local area % of PLHIV respondents from regional Australia reported that they did not have adequate access. 2 This was echoed in the HIV community health sector consultation, with participants commenting that access to testing can be very limited for people in rural and remote areas. 5 Compared to other states, PLHIV respondents from Western Australia 63.6% Queensland 65.7% were less likely to indicate that they had adequate access to testing. 2 Differential access by population: Participants from the HIV community health sector consultation highlighted that CALD communities and Aboriginal and Torres Strait Islander communities have poorer access to regular testing; 5 this is, in part, a result of lower levels of awareness of the personal relevance and benefits of testing. Given the prevalence of late diagnoses among these communities, this issue is especially concerning. HCPs identified the following as the top five barriers to testing: 4 Top5 Barriers to testing 4 * FROM HCPs *Participants could select more than one option 35% Fear of result 20% Fear of HIV-related stigma 30% Fear of discrimination? 20% Lack of access to a testing centre 20% Lack of awareness of the need to test Education for at-risk populations and HCPs, that includes addressing stigma and discrimination, is central to addressing the multifaceted barriers to testing and diagnosis. Increasing access to innovative testing methods, particularly those who noted geography as a barrier, could be supported by at-home testing, or pharmacy screening programs. The great thing about San Francisco is that you re always walking distance from a rapid testing site. We don t have that (level of) access to rapid testing in Australia anywhere; you can count the number of sites on your fingers. [Representative from Victorian AIDS Council, HIV community health sector consultation 5 ] 12

19 BARRIERS TO TREATMENT AND CARE BARRIERS TO TREATMENT AND CARE RECOMMENDATIONS 3. Implement strategies that mitigate the impact of time, distance, comorbidities, Medicare ineligibility, and out-of-pocket costs to achieve optimum treatment rates. 4. Increase access to educational resources to improve HIV health literacy and community understanding of the benefits of early treatment. Antiretroviral Therapy (ART) Combination ART is pivotal in, and the single most important component for, halting the progression of HIV to AIDS; there can also be significant personal, economic, and public health benefits from an individual commencing and remaining on ART. 14 Increased rates of treatment and viral suppression have been associated with reduced rates of new HIV diagnoses. 14 For individuals with HIV, early uptake and sustained use of ART is a key determinant of long-term outcomes, including lifespan, morbidity, and psychosocial well-being. All HIV medicines undergo a thorough cost effectiveness review to assess the benefits gained and the direct medical costs avoided prior to receiving subsidy through the PBS. While not considered during the assessment process, the indirect costs of HIV have been estimated at four to five times greater than the direct medical costs in a US study. 16 Achieving the individual and economic benefits associated with ART requires that universal access to treatment and healthcare be provided to all PLHIV in Australia. Consultations indicate that there remain several unintended barriers to achieving universal care, despite the Australian Government s commitment to Medicare and the PBS. The most significant barriers to treatment and care for PLHIV in Australia are: Time required (e.g. delayed access) to obtain medicines for treatment, PEP or PrEP, because of travel or waiting in clinic or pharmacy. Health literacy regarding treatment, causing a misunderstanding about the relative benefits and harms of medicines. Costs associated with PBS co-payments on medicines associated with treatment of HIV and comorbidities; this particularly affects older PLHIV and those living in states or territories where a co-payment is required. Distance to treatment centres, especially for those who live in rural or regional areas, and fear of disclosure in small communities: Low numbers of HCPs undertaking training to prescribe S100 medications which compounds the issue of accessibility. Stigma, discrimination, and fear that have deterred engagement in care. 13

20 BARRIERS TO TREATMENT AND CARE HCP Perceptions of Barriers to Treatment and Care 4 Time 46% the most frequent barrier to HIV treatment for their patients 88% agreed that disclosure of HIV status remains an issue for their HIV patients Cost 27% Distance 19% Availability 12% PLHIV Attitudes to Beginning ART Treament 2 89% Agreed it is best to begin soon after diagnosis 37% Unsure about the effect of delaying treatment while healthy 30% Unsure if side effects outweigh the benefits 14% Unsure about health benefits of beginning soon after diagnosis 10% Agreed health benefits had not yet been proven % Time Some 46% of HCPs identified time as the single biggest barrier to their patients accessing treatment. 4 It is understood that time as a barrier takes different forms for different sub-populations. People who are working or caring for family members full-time, may find it difficult to find time for regular medical appointments and to attend dispensing pharmacies. Time as a barrier is exacerbated for people who need to travel some distance to attend appointments. While this barrier is not unique to HIV, it becomes more relevant given its interaction with stigma and discrimination, and the potential to alter treatment patterns, i.e. avoiding a family general practitioner for fear of disclosure. 14

21 BARRIERS TO TREATMENT AND CARE Health Literacy and Attitudes Toward Starting Treatment Early Responses from The Listening Tour suggest that health literacy and attitudes to treatment, particularly about starting treatment early, are also barriers to care. Participants from the HIV community health sector consultation highlighted that PLHIV from CALD backgrounds including both gay men and heterosexual women and men are less likely to have the health literacy (and possibly the advanced English language skills) required to access the treatment and care that they need, and may lack knowledge and skills in accessing the Australian health system. 5 I work with women from non-english speaking backgrounds (who often have) a lack of knowledge as to what HIV is. It s linked to their health literacy more generally and some of the things (health workers) take for granted like knowing what a CD4 count is. But some of these women are just told to take medications and they have no understanding of what will happen if they stop. [Representative from Positive Women Victoria, HIV community health sector consultation 5 ] The Listening Tour found some diverse beliefs and misunderstanding in the community about the benefit of early treatment. While 83% of LGBTQI respondents and 89% of PLHIV from The Listening Tour believed it is best to begin treatments soon after diagnosis, 2,3 11% of PLHIV expressed doubt about the benefits of beginning treatment early, 2 and over half of the LGBTQI respondents were not sure whether HIV drugs are harmful, or whether the harms outweighed the benefits. 3 Similar observations are made in the HIV Futures 8 study. 10 In addition, when asked if delaying use of HIV treatments while you are healthy will have long-term benefits, 37% of LGBTI community respondents agreed that there were benefits to such delays and 45% were unsure; while 30% of PLHIV had doubts about the long-term health benefits of treatment. 2,3 Perspectives on delaying HIV treatment 37% LGBTQI community respondents agreed that there were benefits to such delays 45% LGBTQI community respondents were unsure 30% PLHIV had doubts about the long-term health benefits of treatment START (The study that demonstrated the benefits of starting treatment early 17 ) is only two years old, and there was a previous 30 years when people had every reason to wonder when was the right time to start. It s new territory. [Representative from AFAO, HIV community health sector consultation 5 ] 15

22 BARRIERS TO TREATMENT AND CARE Cost Australia has implemented the National Medicines Policy; this is a policy that endeavours to provide timely access to medicines at a cost the individual and community can afford. 18 Our country has a well-regarded system for funding medicines, with the cost being subsidised by the Federal Government through the PBS. Notwithstanding, cost continues to be cited as a barrier to access. Co-payments may lead to financial burden, particularly to those with low incomes and other chronic illnesses such as diabetes and cardiovascular disease. There is evidence that over 50% of PLHIV have other co-morbid mental or physical health conditions. 9 While this financial burden is not unique to PLHIV, polypharmacy (five or more daily medications in addition to antiretrovirals (ARVs)) adversely affects the adherence to ARVs, which may lead to the development of HIV resistance, leading to limited future ARV treatment options. 30 Co-formulated single pill ARV medications have decreased the daily pill burden of ARV and the financial burden of co-payments, however those PLHIV whose HIV virus is not sensitive or cannot take a single pill must inequitably pay the co-payment for separate ARV components. Some States have recognised the co-payment as a barrier and, for good public health reasons, have removed this barrier. 31 However, disparity in co-payments remains across Australia and within states, and may lead to inequitable access. Participants in The Listening Tour indicated that, anecdotally, adherence has improved in those locations which have removed co-payments for ARVs (i.e. New South Wales, Western Australia and one site in Victoria). 5 Residents Ineligible for Medicare The Australian HIV Observational Database Temporary Residents Access Study (ATRAS) estimated that in 2013, there were 450 temporary residents with HIV in Australia who were ineligible for Medicare due to their visa or immigration status. 19 The majority included international students, people on working, bridging or spousal visas, and asylum seekers. HIV-positive temporary residents cannot access subsidised ARV therapy through the Medicare system. Without access to effective HIV treatment, health outcomes for these individuals are further complicated, and the risk of onward transmission of HIV is increased. The ATRAS report provides convincing evidence to justify providing ART to all temporary residents living with HIV, based on patient health outcomes and public health objectives; mathematical modelling demonstrates that providing treatment to people in such circumstances will avert a median of 81 new infections over five years. 19 Distance to Access, Treatment, and Care Some 19% of HCPs surveyed in The Listening Tour indicated that distance to treatment or care centres is a significant barrier to treatment for PLHIV. 4 This was supported by findings from the HIV community health sector consultation, which highlighted that: 5 Access to HCPs and pharmacies is particularly limited in rural and regional areas. There are key suburban areas (such as Western Sydney) and other urban areas also with limited coverage by HCPs authorised to prescribe ARVs (S100 prescribers). 16

23 BARRIERS TO TREATMENT AND CARE If you re a person with HIV in regional and remote areas, you re probably only going to have one HIV doctor, not a choice of HIV doctors. And you re going to have one pharmacy that knows you re HIV positive that you can get your medications in, so you might be concerned about privacy, even if they re good with privacy, which is a problem for regularly accessing services. And in the circumstances where something goes wrong, or you re stigmatised, you are really limited in what you can do to protect yourself you just have to keep on using those services. [Representative from NAPWHA, HIV community health sector consultation 5 ] Fear of Disclosure, Stigma, and Discrimination Unwanted disclosure can be a risk for PLHIV or those being tested for HIV, which can be compounded in smaller communities or where confidentiality is a challenge. Participants from the HIV community health sector consultation noted that stigma and discrimination can be a significant barrier to treatment adherence and ongoing engagement in care. 5 This is because some PLHIV are unable to, or fear, disclosing to their partners, housemates, their communities, or others with whom they live. Although perspectives varied across the groups of respondents, all groups agreed that HIV discrimination and stigma have a significant effect on the mental health and QOL of PLHIV. (For women from CALD backgrounds) there s shame and guilt to even say how it was transmitted so it s really intrusive to talk about these things with their doctors, and especially with their husbands. [Representative from Positive Women Victoria, HIV community health sector consultation 5 ] 17

24 STIGMA, DISCRIMINATION, AND QUALITY OF LIFE STIGMA, DISCRIMINATION, AND QUALITY OF LIFE RECOMMENDATIONS 5. Augment focus on issues relating to HIV quality of life (QOL), stigma and discrimination; 6 and implement objective measures of QOL to track the progress of formal programs. 6. Maintain continuing education in the health and aged care sector to address the risk of stigmatisation and its potential impact on people seeking diagnosis, treatment, and ongoing care. Unfortunately, despite major advances in the treatment of HIV, the stigma and discrimination associated with a positive HIV status has not diminished. 5 The consequences of stigma and discrimination are wide-ranging and include negative impact on both individual well-being and public health. In clinical settings and (with) doctors, there are very high levels of disclosure, but comparatively low levels of stigma. How stigma is linked to treatment adherence is that people are experiencing lots of stigma in other areas, and that s impacting on their mental health, selfesteem and self-worth and that low self-worth is affecting whether or not they can engage in clinical services and adhere to medications. [Representative from NAPWHA, HIV community health sector consultation 5 ] Stigma and Discrimination Experienced by PLHIV 2 75% of respondents worry that people will judge them when they disclose their HIV status 74.6% felt that they needed to hide their status at least some of the time 27.5% of respondents had experienced poor treatment when accessing services or at work as a result of someone knowing their HIV status in the last two years 69.1% agreed that telling someone they have HIV is risky 30.4% thought it is easier to avoid new friendships than disclose their HIV status 86.5% experienced discrimination in health services, followed by the insurance industry (56%), and at places of employment or work (32.4%) % 18

25 STIGMA, DISCRIMINATION, AND QUALITY OF LIFE HCP Perceptions of Stigma and Discrimination Experienced by their HIV patients 4 38% 42% of HCPs surveyed agreed with the statement my patients omit information for fear of judgement of HCPs surveyed agreed with the statement my patients feel the stigma around HIV has generally decreased in the last five years 88% of HCPs agreed that disclosure of HIV status remains an issue for their HIV patients HIV-related stigma and discrimination can come from the attitudes and behaviours of others or can take the form of internalised stigma (or shame). Majority of stigma and discrimination can be attributed to a lack of accurate information about HIV in the contemporary era and the associated fear of transmission. In addition, some stigma and discrimination can be a result of personal attitudes, such as homophobia, which persist in some parts of the Australian population. (internalised stigma) often leads positive people to blame others for the stigmatisation they experience...(much of) the stigma that HIV positive people have to face which is why we have to support each other is the self-stigma. If we don t support each other, the fears we hold about ourselves stop us from being open and honest. It s that stigma that is limiting us as an HIV population. [Representative from Living Positive Victoria, HIV community health sector consultation 5 ] Reducing stigma and discrimination has been a priority in successive national HIV strategies. There has been some important work made towards addressing stigma and discrimination in recent years, including the National Stigma Audit. 20 The Australasian Society of HIV Medicine is currently undertaking a project to address stigma and discrimination in healthcare settings. 32 There remains much to be done in areas such as the workplace and aged care where disclosure can have consequences. Reducing stigma and improving resilience are recognised as foundations to well-being and improved QOL for PLHIV and are essential if we are to create an environment which enables us to achieve both our 90:90:90 targets and our broader goal of ending the transmission and impact of HIV. This will only be possible through a collaborative approach between all HIV stakeholders, including national and state health systems and governments, community partners, clinicians, researchers, and other partners. HIV research, policy, and programs will need to address stigma as a fundamental challenge in this rapidly changing HIV prevention landscape. 28 Following community consultation, ViiV supports the proposal for consultation on SMART (specific, measurable, attainable, relevant, and timely) targets to address stigma and discrimination in the next national HIV strategy. 19

26 PREVENTION THROUGH ACCESS TO BIOMEDICAL INTERVENTIONS PREVENTION THROUGH ACCESS TO BIOMEDICAL INTERVENTIONS RECOMMENDATIONS 7. Improve access to biomedical prevention by: Making access to Pre-Exposure Prophylaxis (PrEP), Post-Exposure Prophylaxis (PEP) and Treatment as Prevention (TasP) more equitable and less dependent on where one lives, ability to pay or wait. Ensuring that innovative HIV medicines continue to be made available on the Pharmaceutical Benefits Scheme (PBS) by addressing potential barriers for new treatment that can arise through unintended consequences of reimbursement policy. The Seventh National HIV Strategy recognises that a sustained focus on prevention is critical. 21 Australia s initial response to HIV prevention was largely reliant on behavioural strategies (i.e. safer sex and safe injecting practices) and improving access to the means of prevention (i.e. condoms and sterile injecting equipment). Today, these strategies are complemented (to varying degrees between jurisdictions) by a suite of biomedical prevention tools, namely TasP, PrEP, and PEP. Participants from the HIV community health sector consultation generally agreed that, overall, Australia s HIV prevention response incorporates a suite of interventions. 5 Participants commented that the prevention response is relatively wide-ranging and multi-level, incorporating behavioural, biomedical, and structural aspects of prevention, and engaging individuals, couples, groups, networks, and communities. 5 It does, however, need to be scaled up and appropriately directed to improve reach, relevance, and impact to individuals and populations at risk. The current strategies that we have are effective, but we need to make them available It s a suite of strategies that we have to push. The fight for us is currently around PrEP and TasP, but how we promote those strategies and increase testing without being seen to be abandoning 30 years of condom messaging is the challenge. [Representative from Victoria AIDS Council, HIV community health sector consultation 5 ] 20

27 PREVENTION THROUGH ACCESS TO BIOMEDICAL INTERVENTIONS Treatment as Prevention (TasP) TasP has been demonstrated to have the most substantial effect on HIV incidence; 22 TasP is the prevention method of prescribing ART to those who are infected with HIV to reduce the amount of virus in their blood (and body fluids) so that they are, in turn, less likely to infect others. TasP continues to be a cornerstone of HIV prevention strategies, supported by the introduction of other preventative methods including PrEP. Combination strategies, including TasP, PrEP, and PEP, as well as other interventional strategies, such as educational campaigns, will be required to further reduce transmission. Treatment as Prevention (TasP) is actually slightly more effective than Pre-Exposure Prophylaxis (PrEP) with important additional health benefits for the individual; like preserving the immune system, delaying the onset of other HIV related health problems and preventing the damage that inflammation does in the long term. TasP is also a precisely targeted form of HIV prevention. Every new instance of HIV transmission involves an HIV positive person. So, by removing treatment barriers and ensuring that the 27,500 HIV positive people in Australia all have access to treatment as early as possible, we can dramatically reduce, and in most cases completely eliminate, the chance of onward HIV transmission as well as protecting the health of the positive community. TasP and PrEP complement each other. They go together. But we only just got the discussion about TasP to where we needed it to be when we were eclipsed by the opportunity that PrEP provided and we had to act. So now, we need to go back and give immediate treatment the attention that it needs. [Representative from NAPWHA, HIV community health sector consultation 5 ] However, even with the advantages of TasP identified, the HIV community health sector consultation highlighted that: 5 TasP alone, despite having the most substantial effect on HIV incidence, will not be enough to end the epidemic. TasP needs to be conceptualised as a tool within an integrated prevention program, rather than the solution unto itself. There remains variation in uptake of and adherence to treatment, with Kirby Institute s most recent Surveillance Report indicating that only 69% of PLHIV have an undetectable viral load. 9 Pre-Exposure Prophylaxis (PrEP) There is now evidence demonstrating the efficacy of PrEP; PrEP is a prevention method in which people who do not have HIV infection still take medication to reduce their risk of becoming infected. The build-up of ART in the body can stop HIV from replicating and forming an infection following exposure. There has been tremendous uptake where PrEP trials have been established and supported by State government. However, PrEP access is not universal in Australia and is limited to participating clinics. Furthermore, PrEP awareness may not be high among certain at-risk groups. Participants noted access to PrEP is limited: In September 2016, only 1.8% of PLHIV said they had taken PrEP prior to being diagnosed with availability and cost identified as the major barriers. 2 It is important to note that the surveys were conducted prior to PrEP studies being introduced in NSW, Victoria, Queensland, and South Australia. 2 Although 63% of gay males were concerned about contracting HIV, 66.1% had not taken PrEP and 21.4% did not know what it is. 3 21

28 PREVENTION THROUGH ACCESS TO BIOMEDICAL INTERVENTIONS Pre-Exposure Prophylaxis (PrEP) There is now evidence demonstrating the efficacy of PrEP; PrEP is a prevention method in which people who Opinions on PrEP PLHIV Survey 2 Only1.8% of PLHIV said they had taken PrEP prior to being diagnosed 2 Cost and Availability noted as major barriers in this decision LGBTQI Community Survey 3 63% of gay males were concerned about contracting HIV 66.1% had not taken PrEP 21.4% did not know what PrEP is 70 Top 4 PrEP Barriers 4 from HCPs % Availability 62% Cost 8% Time % Distance In the same way that the contraceptive pill gave women an additional option to prevent pregnancy, allowing some women to use it over the short-term, some over the long-term, or change to other forms of contraception as their relationships changed, PrEP will allow gay men to do the same thing: at different points in their lives gay men will use different prevention strategies that actually make sense to them, and the more options that we give people that are safe and effective, the better off we are in terms of preventing HIV. [Representative from AFAO, HIV community health sector consultation 5 ] 22

29 PREVENTION THROUGH ACCESS TO BIOMEDICAL INTERVENTIONS Post-Exposure Prophylaxis (PEP) PEP remains a useful tool in the suite of primary prevention strategies. This strategy involves taking anti-hiv medicines after a potential exposure to the HIV virus to prevent HIV infection; the medicines need to be taken within 72 hours of sexual exposure to be effective. 29 While PEP is an effective option, it is not widely available, and can require a long wait in an accident and emergency department in a public hospital and, as such, ensuring equitable and timely access to PEP remains a challenge. Data from the LGBTQI and PLHIV surveys indicate that PEP is currently under-utilised and not widely understood due to the limited window for access, the difficulties assessing exposure to risk (and thus determining eligibility for PEP), and a lack of people seeking to access PEP because of concern for, or actual past experiences of, being stigmatised when presenting for PEP (especially in a mainstream setting such as a hospital emergency department). 2,3 Behavioural Prevention Behavioural prevention and improving access to the means of prevention remain pillars of the Australian HIV response. For many HIV-negative people, consistent condom use remains an acceptable way to reduce the risk of HIV infection and there is a need to reinforce this safe sex practice, the access to condoms, through high-profile relevant campaigns and social media activity. Participants from the HIV community health sector consultation noted that to encourage behavioural prevention, the campaigns need to be relevant, engaging and acceptable to the target audience. 5 There has been a change in the relationship between the HIV epidemic and many in the gay community. Improvements in the efficacy of HIV treatments are considered by many to have shifted the dynamic, with 81% of HCPs agreeing that advancements in treatment reduced perceived seriousness of HIV. 4 Most of the research indicates that the more fear we create about HIV, the bigger the barrier is to testing; it doesn t actually have any (positive) impacts on condom use not taking account of people s motivations and other considerations means that you won t get your message through because it won t be relevant. [Participant from ARCSHS, HIV community health sector consultation 5 ] In addition to the highly targeted and context-specific work, there is also a need for broader national awareness campaigns that reflect the current reality of HIV in Australia and the region. So much of the Australian story, and so much of the stigma that still attaches itself to HIV is about the Grim Reaper, and about the early years, and people s fear and anxiety about transmission and contagion a whole set of things that are irrational and out of date. [Representative from AFAO, HIV community health sector consultation 5 ] It has been recognised that these outdated impressions make it difficult to reach affected communities and populations who are part of more mainstream communities. 23,28 23

30 PARTNERSHIP PARTNERSHIP RECOMMENDATIONS 8. Develop an Eighth National HIV Strategy with a clear implementation plan. It should be endorsed by all stakeholders and have an additional focus on the needs of minority populations. 9. Ensure community-based organisations are able to continue to meet community needs and expectations, and assist in delivering the goals of the National HIV Strategy, by: Ceasing disinvestment in the current community-based organisations. Considering optimal long-term funding models for community-based organisations to ensure services remain sustainable, diverse and non-duplicative. 10. Focus resources on training new healthcare professional (HCP) workforce entrants, given the generational workforce shift currently taking place. Australia s collaborative approach to the HIV epidemic has been critical to its success. The ongoing partnerships between affected communities and their organisations, academic institutions, HCPs, medical associations and colleges, government (state and federal), and pharmaceutical and biotechnology companies remains vital. Moving forward, significant effort will be required by each stakeholder to clarify their role, and determine how each can work in ongoing partnership. In this context, the Eighth National HIV Strategy will be integral to providing a renewed framework for continued collaboration. Community Organisations Leadership and delivery by community-based organisations has been the hallmark of the successful response to HIV since the emergence of AIDS in Australia in the 1980s. 24 It is vital that communities can speak on their own behalf and tailor their responses in ways that are relevant to their community members. The meaningful involvement of people living with HIV (MIPA) set of principles provides a Code of Good Practice for non-governmental organisations (NGOs) 25 responding to HIV/AIDS. This Code recognises that involving PLHIV and affected communities in the HIV response can be a powerful tool; doing this enables individuals and communities to draw on their experiences and this can reduce stigma and discrimination which, in turn, increases the effectiveness and relevance of the HIV response. 25 As such, community organisations must continue to be central to the response and have the capacity in terms of structure, focus and finances for delivery. 24

31 PARTNERSHIP If an NGO isn t community-based then it doesn t bring that deep connection to communities, doesn t have the authority of communities, and doesn t have that permission to speak for our communities. [Representative from AFAO, HIV community health sector consultation 5 ] Many PLHIV rely on local community organisations for news, education, awareness, and advocacy (53%); and most community members (74%) and HCPs (92%) agree that community organisations are necessary for PLHIV. 2-4 The publication of an online survey of newly diagnosed Australian gay men demonstrated that peer support can lead to positive changes in sexual risk behaviour and therefore decrease the risk of onward HIV transmission. 27 There is an imperative for community organisations to continually adapt to the changing needs of PLHIV and other priority populations. This includes strengthening support for marginalised communities and people who are newly diagnosed, as well as continuing to diversify approaches to engagement and models of service delivery. Community organisations in several jurisdictions have been adversely affected by reductions in total funds available, reducing their capacity to deliver programs and services as well as to advocate for people with, or at risk of, HIV. Current funding models tend to favour the provision of services over policy development and advocacy. This situation may dilute the capacity of community organisations to advocate on behalf of their communities and to critically contribute to policy and program development. Opportunities for Community Groups Moving Forward In many ways, the HIV community in Australia is a victim of its own successes. The community, and community groups, have risen to meet the challenges faced and greatly contributed towards near achievement of the 90:90:90 goals. While the advances made are remarkable, there is the possibility these successes, have also led to a disinvestment, and shift in focus, by governments. Given the imminent opportunity of achieving the National HIV Strategy goals, it is vital now more than ever, to continue to provide funding, resources, and energy towards eradicating HIV transmission and reducing its negative impact on PLHIV. To meet these challenges, there is an opportunity to review and enhance the current funding models for community organisations, while rationalising and searching for efficiency where possible. The scope of such considerations should consider: Optimum long-term funding models to ensure community support services remain sustainable, efficient, and non-duplicative. No further disinvestment in the community sector. The potential to rationalise and consolidate some services to expand the reach to currently unmet needs. Current models, namely tender for service arrangements, reward competition over collaboration, such that, community organisations which have historically considered themselves partners, now face the reality of competing with one another for the same pool of government or industry funding. The onus is on the community and community groups as a whole, to consider what is needed to ensure they continue to meet the needs of the community now and well into the future. 25

32 PARTNERSHIP To ensure funding is received and best used, clarity is essential. The community needs to be clear in its expectations of funding provision from the government and the government needs to be clear about its expectations, accountability, and long-term financial commitment. If the government can offer this transparency, it will help provide certainty to the community so it can lead innovation and deliver services and support to PHLIV and at-risk populations. Interestingly, from a PLHIV perspective, there has been a move towards peer navigation; this is a valuable service which needs to be explored further. Participants from several community organisations stressed the need for engagement with peers and the support of the community. 5 Health Care Professionals (HCPs) In Australia primary care of PLHIV remains with specialist general practitioners. Of the HCPs surveyed, 73.3% had been working in HIV for 16 years or more and only 3.4% have entered the HIV field in the last four years. 4 While this illustrates the highly-experienced healthcare support for PLHIV, workforce development will be a critical issue over the next years. This will need to be addressed through incentives to encourage specialisation and broader education of HCPs to understand benefits of early treatment and connection to care. With approximately 50% of infected people presenting advanced symptoms of HIV in the years , 10 it remains necessary for the symptoms of HIV to be identified within allied health services and regular health checks in primary care. A shared care model is essential in early diagnosis and addressing stigma and discrimination. Government Both Federal and State Governments have crucial roles in leading the response to HIV in Australia. Over the past three decades, Australia has been fortunate to have had and still have a bipartisan commitment to tackling HIV. Despite political sensitivity, bipartisanship has been fundamental in successfully providing the necessary resources and focus to HIV prevention, treatment, and care for affected communities with minimal disruption. In addition to the bipartisan commitment to address HIV, a coordinated and tangible Federal Government Strategy, supported by State and Territory Governments, has been central to improving the lives of PLHIV. It is vital, that all levels of government remain engaged and active in working toward the 2020 targets, while working together on a coordinated strategy to ensure systematic and comprehensive approaches are enacted across Australia and its States and Territories. This requires a level of investment sufficient to reach those targets. Among HCPs, PLHIV, and other key informants, there is now a range of views about the extent to which the government is continuing to provide the leadership required: 54.5% of PLHIV agreed that the government s focus on HIV has waned over the past five years, and only 27.5% agreed that HIV is still on the government agenda. 2 50% of HCPs don t know if HIV is still on the Federal Government agenda. 4 Perception that there has been a general loss of political will and inadequate prioritisation of investment in HIV. 5 26

33 PARTNERSHIP Confusion about what actions the Federal, State and Territorial Governments are taking, especially in Queensland and Victoria. 2 Belief that governments, particularly the Federal Government, are pulling out of their investments too early. 4 of PLHIV agreed that the Government s focus on HIV has 54.5% waned over the past five years 2 50% of HCPs don t know if HIV is still on the Federal Government agenda4 Australia s success in addressing HIV in the past has been made possible by the partnership between all key sectors, through a visible strategy, and this needs to continue and be strengthened if the goals of the current National HIV Strategy, and the 90:90:90 ambition by 2020, are to be met. A Responsible and Viable Medicines Industry Maintaining a responsible and viable medicines industry is a key focus of Australia s National Medicines Policy. 18 Moreover, the medicines industry is a key partner in the response to HIV through the ongoing delivery of current treatments, investment in new treatments, ongoing education for HCPs, and support of the community. To ensure this contribution continues well into the future, the pharmaceutical industry requires appropriate returns for the research, development, manufacture, and supply of medicines. Consistent, transparent, and predictable government policy frameworks, particularly in the PBS, are necessary to support this. Almost all respondents from the PLHIV survey (91%) agreed with the statement that the pharmaceutical companies that produce HIV treatments are a necessary part of the fight to end HIV, although about half remain sceptical about the motivation of pharmaceutical companies. 2 Similarly, 96% of HCPs agree that pharmaceutical companies are a necessary part of the fight to end HIV. 4 91% 96% of PLHIV2 of HCPs4 agreed that the pharmaceutical companies that produce HIV treatments are a necessary part of the fight to end HIV Other Stakeholders Strategies are required to support a shared care and support model for PLHIV to achieve universal acceptance, exclusiveness, and normalisation of HIV for Australia to achieve 90:90:90. Primary and allied health will be essential in educating a wider workforce to reduce stigma and discrimination, and enable earlier presentation of patients with symptoms and early diagnosis. Engagement and education of multicultural and specialist community services will be required to address CALD communities. 27

34 CONCLUSION The Australian response to HIV has been sufficiently effective for us to consider that we could be one of the first nations to virtually end transmission of HIV while fully addressing its impact on the well-being of those living with the virus. However, barriers and challenges remain to be addressed. Achievement of this significant ambition will require sustained focus, innovation, investment and collaboration from all stakeholders who are involved. is dedicated to improving the lives of people with HIV and is absolutely committed to playing our role with all stakeholders to secure a future free of HIV here and around the world. We believe that the findings outlined in this report, and proposed 10 recommendations, will be helpful in informing the development of the next phases of the response to the HIV epidemic. 28

35 GLOSSARY 90:90:90: A concept introduced by the United Nation s programme on HIV/AIDS, with the target that; by 2020, 90% of all people living with HIV will know their HIV status, 90% of all people with diagnosed HIV infection will receive sustained antiretroviral therapy, and 90% of all people receiving antiretroviral therapy will have viral suppression. ii Antiretroviral therapy (ART): ART is the use of HIV medicines to treat HIV. Standard ART consists of the combination of antiretroviral medicines to slow the rate at which HIV multiplies in the body. iii Australian HIV Observational Database Temporary Residents Access Study (ATRAS): The Kirby Institute and the National Association of People Living with HIV (NAPWHA) conducted a study, providing antiretroviral treatment to 180 HIV-positive people who were temporary residents in Australia and therefore not eligible for Medicare. iv CD4: Often called T-cells or T-helper cells, CD4 cells are a type of white blood cell that play a vital role in protecting the body from infection. In people with HIV, a CD4 count is the most important laboratory indicator of how well one s immune system is working and the strongest predictor of HIV progression. v HIV Futures: Anonymous survey of PLHIV. The survey asks people about a range of issues; including their health, treatments, work and financial situation. HIV Futures surveys have been conducted every two to three years since 1997, attracting responses from around 1000 PLHIV each time. vi Medicare ineligible: Persons ineligible for Medicare include temporary residents who are approved for non-permanent entry into Australia and under various visa arrangements, including student, business, and employer sponsored work visas. vii Post-Exposure Prophylaxis (PEP): Involves taking anti-hiv medicines after a potential exposure to the HIV virus to prevent HIV infection. Pre-Exposure Prophylaxis (PrEP): A prevention method in which people, who do not have HIV infection, take medication to reduce their risk of becoming infected. S100: Refers to a Section 100 Highly Specialised Drug under the National Health Act, meaning there are restrictions on prescribing these medicines. ART is classed as a S100 and can only be prescribed by tertiary consultants and general practitioners who are accredited and maintain their continuing professional development in HIV. ii UNAIDS An ambitious treatment target to help end the AIDS epidemic. Available online: media_asset/ _en_0.pdf [Accessed 9 May 2017]. iii AIDSinfo HIV/AIDS Glossary. [Accessed 21 May 2017]. iv UNSW Australia, Kirby Institute and NAPHWA The Australian HIV Observational Database Temporary Residents Access Study (ATRAS). Two year follow-up. Available online: [Accessed 9 May 2017] v AIDSinfo HIV/AIDS Glossary. [Accessed 21 May 2017]. vi Power J et al. HIV Futures 8 (2016): Health and wellbeing of people living with HIV. Melbourne: Australian Research Centre in Sex, Health and Society, La Trobe University. Available online: data/assets/pdf_file/0006/766896/hiv-futures-8-broadsheet-1-on-health-andwellbeing.pdf [Accessed 9 May 2017] 29 vii UNSW Australia, Kirby Institute and NAPHWA The Australian HIV Observational Database Temporary Residents Access Study (ATRAS). One year follow-up.

36 GLOSSARY Seventh National HIV Strategy : The Seventh National HIV Strategy is one of five government strategies aiming to reduce sexually transmissible infections and blood borne viruses, and the morbidity, mortality, and personal and social impacts they cause. viii Strategic Timing of Antiretroviral Treatment (START): The Strategic Timing of Antiretroviral Treatment was a randomised controlled trial conducted by the International Network for Strategic Initiatives in Global HIV Trials (INSIGHT); the Kirby Institute at the University of New South Wales Australia was one of the coordinating centres. The primary objective of START was to determine whether taking ART immediately was superior in terms of risk of AIDS, other serious illnesses or death compared to waiting until the CD4 cell count declined to 350 cells/mm. 3 This study demonstrated strong evidence that early ART is beneficial to the HIV-positive person irrespective of CD4 count. ix Treatment as prevention (TasP): Refers to the prevention method of prescribing ART to those who are infected with HIV to reduce the amount of virus in their blood (and genital fluids) so that they are less likely to infect others. x Undetectable viral load: Refers to having an undetectable viral load, if it is under the lower level of detection of the test (which in most laboratories is now 50 copies/ml) in a sample of blood, which greatly reduces the chance of transmitting HIV to people who are HIV-negative. xi Viral load: Refers to the amount of HIV in a sample of blood. When a viral load is high, there is more HIV in the body, which means the immune system is not fighting HIV as well. xii viii Australian Government Department of Health Seventh National HIV Strategy. Available online: publishing.nsf/content/8e87e65eef535b02ca257bf0001a4eb6/$file/hiv-strategy2014-v3.pdf [Accessed 9 May 2017]. ix The INSIGHT START Study Group. Initiation of antiretroviral therapy in early asymptomatic HIV infection. N Engl J Med 2015; 373: x Cohen MS et al. Prevention of HIV-1 infection with early antiretroviral therapy. N Engl J Med 2011; 365: xi ASHM guide to Australian HIV Laws and Policies for Healthcare Professionals. Low viral load. [Accessed 21 May 2017]. 30 xii AIDSmap. Viral load. [Accessed 21 May 2017].

37 ABBREVIATIONS AFAO ARCSHS ASHM AIDS ART ARV CALD HAART HCP HIV LGBTQI MIPA NAPWHA NGO PBS PEP PLHIV PrEP QOL R&D STI TasP UNAIDS Australian Federation of AIDS Organisations Australian Research Centre in Sex Health and Society, La Trobe University Australasian Society for HIV, Viral Hepatitis, and Sexual Health Medicine Acquired immune deficiency syndrome Antiretroviral therapy Antiretroviral Culturally and linguistically diverse Highly active antiretroviral therapy Healthcare professional Human immunodeficiency virus Lesbian, gay, bisexual, transgender, queer or questioning, and intersex Meaningful involvement of people living with HIV National Association of People with HIV Australia Non-government organisation Pharmaceutical Benefits Scheme Post-exposure prophylaxis People living with HIV Pre-exposure prophylaxis Quality of life Research and development Sexually transmissible infection Treatment as prevention Joint United Nations Programme on HIV/AIDS 31

38 REFERENCES 1 UNAIDS An ambitious treatment target to help end the AIDS epidemic. Available online: files/media_asset/ _en_0.pdf [Accessed 9 May 2017]. 2 Data on file. Living Positive Victoria. Your HIV journey, September Data on file. Forethought 9 Market Research. LGBTQI survey, September Data on file. Forethought 9 Market Research. HCP survey, September Data on file. Living Positive Victoria. A consultation with the HIV community health sector, December Lazarus JV et al. Beyond viral suppression of HIV the new quality of life frontier. BMC Medicine 2016; 14: van Sighem AI et al. Life expectancy of recently diagnosed asymptomatic HIV-infected patients approaches that of uninfected individuals, AIDS 2010; 10: Nakagawa F et al. Projected life expectancy of people with HIV according to timing of diagnosis. AIDS 2012; 26: The Kirby Institute. HIV, viral hepatitis and sexually transmissible infections in Australia. Annual Surveillance Report The Kirby Institute, UNSW Australia, Sydney NSW Power J et al. HIV Futures 8 (2016): Health and wellbeing of people living with HIV. Melbourne: Australian Research Centre in Sex, Health and Society, La Trobe University. 11 Pozniak A. Quality of life in chronic HIV infection. Lancet HIV 2014; 1: e6-e7. 12 Hutton VE et al. Subjective wellbeing and felt stigma when living with HIV. Quality of Life Research 2013; 22: Catalan J et al. HIV infection and mental health: suicidal behaviour-systematic review. Psychology, Health and Medicine 2011;16: Panel on Antiretroviral Guidelines for Adults and Adolescents. Guidelines for the use of antiretroviral agents in HIV-1-infected adults and adolescents. Department of Health and Human Services. Available at [Accessed 9 May 2017]. 15 National HIV testing Policy Expert Reference Committee National HIV Testing Policy v1.1. Available online: org.au/resources/australian_national_hiv_testing_policy_v1-1.pdf [Accessed 9 May 2017]. 16 Hutchinson AB et al. The economic burden of HIV in the United States in the era of highly active antiretroviral therapy. J Acquir Immune Defic Syndr. 2006; 43: The INSIGHT START Study Group. Initiation of antiretroviral therapy in early asymptomatic HIV infection. N Engl J Med 2015; 373: Australian Government Department of Health National Medicines Policy. Available online: nationalmedicinespolicy [Accessed 14 March 2017]. 19 UNSW Australia, Kirby Institute and NAPHWA The Australian HIV Observational Database Temporary Residents Access Study (ATRAS). Two year follow-up. Available online: [Accessed 9 May 2017]. 20 NAPWHA and NCHSR The HIV Stigma Audit Community Report. Available online: report.pdf [Accessed 9 May 2017]. 21 Australian Government Department of Health Seventh National HIV Strategy. Available online: stigma_audit_report.pdf [Accessed 9 May 2017]. 22 Rodger AJ et al; PARTNER Study Group. Sexual activity without condoms and risk of HIV transmission in serodifferent couples when the HIVpositive partner is using suppressive antiretroviral therapy. JAMA 2016; 316: NAPWHA Scare tactics. Available online [Accessed 9 May 2017]. 24 AFAO. Keeping community at the centre of HIV research. HIV Australia 2016; 14: 4-6, NGO Code of Good Practice. Self-assessment checklist: Meaningful involvement of PLHIV and affected communities (MIPA). Available online: MIPA.pdf [Accessed 9 May 2017]. 26 Power J et al. Use of antiretroviral treatment among people living with HIV in Australia between 1997 and AIDS Care 2017; 29: Prestage G et al. Impact of peer support on behaviour change among newly diagnosed Australian gay men. J Acquir Immune Defic Syndr 2016; 72: Brown G et al. Stigma, gay men and biomedical prevention: the challenges and opportunities of a rapidly changing HIV prevention landscape. Sexual Health 2016 [Epub ahead of print]. 29 Centers for Disease Control and Prevention, U.S. Department of Health and Human Services. Updated Guidelines for Antiretroviral Postexposure Prophylaxis After Sexual, Injection Drug Use, or Other Nonoccupational Exposure to HIV United States, Available online: [Accessed 9 May 2017]. 30 Krentz HB and Gill MJ. The impact of non-antiretroviral polypharmacy on the continuity of antiretroviral therapy (ART) among HIV patients. AIDS Patient Care and STDs 2016; 30: NSW Government Health. Changes to Co-Payments for Section 100 Highly Specialised Drugs. Available online: au/pharmaceutical/pages/s100-copayments.aspx [Accessed 9 May 2017]. 32 Data on file. ASHM Personal Communication. 33 Croxford S et al. Suicide among people diagnosed with HIV in England and Wales compared to the general population. British HIV Association conference, abstract O16, Liverpool, April Croxford S et al. Mortality and causes of death in people diagnosed with HIV in the era of highly active antiretroviral therapy compared with the general population: an analysis of a national observational cohort. Lancet Public Health 2017; 2: e35 e46. 32

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