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Australian Research Centre in Sex, Health and Society HIV Futures Seven The Health and Wel being of HIV Positive People in Australia Jeffrey Grierson Monograph SerieS nuMber 88
iSbn 9781921915338
La Trobe univerSiTy 2013
Australian Research Centre in Sex, Health and Society HIV Futures Seven The Health and Wel being of HIV Positive People in Australia Jeffrey Grierson ashm logo guidelines
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TreaTMenTS 8
execuTive SuMMary
Antiretroviral therapy Those currently using ARV Difficulties of taking ARV Attitudes to ARV HIV antibody testing Health status of those using ARV Pre- and post-test counsel ing/discussion Those not currently taking ARV Current health status Reasons for stopping ARV treatment Experience of health and general wel being Those who have never used antiretroviral drugs CD4 and viral load Attitudes to antiretroviral therapy Health conditions in addition to HIV Treatment decision making AIDS defining il nesses Relationship with doctor HIV/AIDS related conditions Treatment optimism Attitudes towards body image Treatment breaks Other sexual y transmitted infections Most recent treatment break Other health conditions Dosing and adherence ServiceS 13
Multiple hepatitis experience Services used at HIV organisations Psychiatric medications Diagnosis of a mental health condition Information about HIV treatment and management Health maintenance Information about living with HIV Attitudes to health management Lack of information Other health monitoring Involvement with AIDS organisations Complementary therapies HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 The SociaL worLd of pLhiv
Contact with other PLHIV Correlates of Poverty Unwanted disclosure Discrimination 28 The place of HIV in people's lives Attitudes to HIV status Planning for the future Relationships and sex appendix 30
Methods and instrument Regular partners Recruitment and sampling Justification of study methodology Hiv, sex, relationships and treatments Criminalisation of HIV transmission Recreational drug use Further Analysis and Reports 32
hoMe, work and Money
Current accommodation Employment status Impact of HIV on employment Those Currently in Paid Employment Income 25Expenditure and Debts Assessments of Benefits HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 1058 people living with HIV/AIDS completed These organisations co-ordinate the We thank the Department of Health and the HIV Futures 7 Survey. We are grateful for involvement of their member organisations Ageing (DoHA) who provide funding for their interest in research conducted by the around the country and provide consolidated Australian Research Centre in Sex, Health and advice and guidance for this project. This project follows on from the HIV Futures Society, and thank them for their willingness We are indebted to the many people who 1, 2, 3, 4 5 and 6 Studies conducted in 1997 to participate.
helped us publicise the survey and recruit 1999, 2001, 2003, 2005 and 2008. We would We would like to express our appreciation for participants. like to acknowledge the researchers who the input and advice provided by the three This includes numerous individuals and contributed to these projects.
partner organisations and their membership: organisations around Australia who in § The National Association of People With addition to their tireless work to better the HIV Australia (NAPWHA), lives of HIV positive people recognise the importance of a strong evidence base and § The Australian Federation of AIDS Organisations (AFAO) and support this project in many ways.
§ The Australasian Society for HIV Medicine HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 Executive summary When asked if they had experienced any Difficulties of taking ARV of the following conditions in the previous The HIV Futures 7 survey was completed by § 37.6% of those participants currently 1058 HIV positive Australians from all states taking ARV reported that they experienced and territories. This represents approximately § 80.2% reported low energy or fatigue difficulties taking them of which the major 4.3% of the estimated HIV positive population. § 66.8% experienced a sleep disorder § 41.9% experienced confusion or memory loss § 21.3% side effects § 92.2% were male (975), 6.7% were female (70) and 0.3% were transgender (3). § 66.8 % experienced low libido § 21.3% remembering to take the drugs on time § 83.1% were gay men, 6.1% heterosexual § 23.9% reported experiencing § 13.8% transporting medication women, 4.3% heterosexual men, 3.8% § 9.9% taking medication in public bisexual men, 0.1% lesbian women and 73.9% of respondents reported that they had § 11.3% organising meals around the drugs 0.5% bisexual women. The remaining 2.1% undergone sexual health screening in the § 8.1% taking large numbers of tablets.
fell into other categories.
twelve months prior to survey.
Attitudes to antiretroviral therapy § The respondents' ages ranged 19 to 84 17.5% said they had been diagnosed with an years with a mean of 49.0 years and STI in the previous twelve months.
Does ARV mean better prospects a median of 49 years. The majority of participants were Australian born (78.2%). § 86.3% of respondents believed that § Twenty two respondents (2.1%) were of § 34.8% of respondents had taken combination antiretroviral drugs mean Aboriginal/Torres Strait Island origin.
prescribed medication for depression in better prospects for PLHIV the last six months § 8.1% believed that it is still too soon to tell § 48.1% had ever had a diagnosis of a mental § 24.9% believed that combination health condition. antiretroviral drugs are harmful HIV antibody testing § 41.5% of all respondents had ever been § 29.2% believed that the side effects outweigh § 24.5% tested for HIV because they became diagnosed with depression, 17.2% in the the benefits of antiretroviral drugs.
previous two years. Treatment breaks § 18.9% tested as part of routine health § 27.9% of those currently on ARV had taken § 18.0% had at some point had hepatitis A a break from ARV § 8.7% tested because they were a member § 60.6% had been vaccinated against § Doctors were less likely to be consulted before a break than § 10.9% tested because of a particular risk § 18.9% had at some point been diagnosed during or afterward with hepatitis B, of whom: § 58.3% discussed this with their doctor § 2.8% were tested without their knowledge.
§ 71.0% had cleared the infection before the treatment break.
Current Health Status § 13.4% had ongoing infection and Dosing and adherence § 71.4% rated their health as good or § 5.2% had a chronic infection § 48.9% of the sample were taking ARV excellent and 62.7% rated their general § 68.9% had been vaccinated against well-being as good or excellent.
§ 2.2% were taking ARV three times a day § Almost all PLHIV had taken a CD4/T-cell § 15.7% of respondents said they had test and a viral load test. never had hepatitis C.
§ 47.1% were taking ARV once a day § 49.9% said they were taking medication as HIV-related and other health conditions tREAtMEntS prescribed 100 percent of the time, 79.8% § 22.3% of respondents had been diagnosed said at least 90 percent and 86.9% said at with an AIDS defining illness, 3.3% in the Antiretroviral therapy least 80 percent. Only 7.4% said less than previous two years. 50 percent of the time.
Antiretroviral use: § 40.6% of respondents indicated that they Complementary therapies had experienced HIV-related illnesses. § 87.3% were currently using ARV § 62.5% used vitamin and mineral § 46.0% indicated that they had a major § 91.0% had used ARV at some time heath condition other than HIV/AIDS. The § 80.6% of those on ARV were using most common conditions were asthma a pre-formulated combination § 18.2% used herbal therapies (8.3%), cancer (6.4%), cardiovascular § 16.5% used marijuana for medicinal disease (e.g. high blood pressure) (7.3%), type II diabetes (4.2%), hepatitis C (6.0%).
§ Complementary therapies tended to be used in conjunction with allopathic treatment. HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 EXECUtIVE SUMMARY tHE SOCIAl wORlD Of PlHIV § 31.5% of the respondents had anal or vaginal intercourse with a regular partner Contact with other PLHIV in the past six months. Condom use with regular partners was strongly related to § For HIV specific treatment 51.5% saw an § 92.0% knew another PLHIV HIV GP/S100 prescriber and 26.8% saw an the HIV-status of the partner. § 15.0% had a spouse/partner with HIV HIV specialist/physician § 48.2% of the sample had sex with casual § 49.5% had acquaintances with HIV partners in the past six months. 25.9% of § For general health care treatment, 47.3% of § 70.9% spent at least some time PLHIV saw an HIV GP/S100 prescriber and male respondents reported always using 32.1% saw a non-HIV GP condoms with casual male partners. § 12.4% spent a lot of time with other PLHIV § For 47.8% of respondents, these were Information about the most recent episode § 29.1% spent no time with other PLHIV different doctors. of sex with a casual partner in the previous § 15.5% had been involved with the care of six months was provided by over half the someone with HIV/AIDS in the last two years.
sample. Vaginal or anal intercourse took Services used at AIDS organisations: For 48.9% of respondents HIV was an place in 77.2% of these instances. § 20.0% treatment advice important part of their identity, while for Condom use with the most recent casual § 27.1% social contact 17.5% it was an essential part. HIV status tended to be less important than identities § 22.3% counselling § 9.7% of those who had sex with an HIV+ based on sexuality, gender or family. § 18.6% peer support § 8.3% advice on legal matters.
§ 71.2% of those who did not know their partner's HIV status Almost all respondents had disclosed their HIV status to at least one person, generally § 60.8% of those who had sex with an HIV Most important source of information on partners, close friends and family. negative partner.
For 52.8% of respondents, their HIV status 53.7% of PLHIV would prefer to be in a § 77.0% said HIV GPs/S100 prescribers or had been disclosed to another person when relationship with someone who is also HIV they did not want it to be (25.4% in the last positive. 60.0% of PLHIV expressed some § 7.6% said the internet fear of rejection from potential partners if § 5.7% HIV/AIDS organisations they tell of their HIV status. The majority of § 5.7% HIV magazines and newspapers PLHIV (54.2%) felt HIV had a negative effect on their sexual pleasure. § 0.6% social sources- friends, family etc.
Sources of ‘a lot' of social support: Important sources of information on living § 77.8% partners/spouse Only 22.8% of PLHIV agreed with the statement I feel more confident about unprotected sex because of the new § 32.2% said HIV GPs/S100 prescribers treatments. or HIV specialists § 43.6% close friends One quarter of PLHIV agreed that § 20.7% HIV/AIDS organisations Planning for the future undetectable viral load means HIV is unlikely § 14.3% HIV magazines and newspapers 19.7% planned only one day at a time, while to be transmitted (28.1%). § 13.0% said the internet 53.3% planned at least one year ahead. § 12.5% social sources- friends, family etc.
Legal issues around disclosure Relationships and sex § 45.2% agreed with the statement I am Involvement with HIV/AIDS worried about disclosing my HIV status to § Over one quarter (28.8%) of PLHIV were not having sex at present. 41.7 % of PLHIV sexual partners because of the current legal 65.0% had some contact with HIV/AIDS were in a regular relationship, and a situation. organisations, mostly receiving newsletters slightly smaller number had sex within the § 30.1% expressed some concern about the or being clients of these organisations. 7.9% relationship (38.6%). Just under half of this legal implications of disclosure of sexual were employees of HIV/AIDS organisations. group also had sex with casual partners practices to service providers.
(15.4%). 32.7% of respondents had causal Recreational drug use Alcohol was the drug most commonly used § Of those in a regular relationship 40.6% had a partner who is also HIV positive, by PLHIV (79.5%), and 30.2% had used 57.7% had an HIV negative regular partner tobacco in the previous 12 months. and 1.6% a partner of unknown status. Nearly all (97.5 %) PLHIV had disclosed their status to their regular partner. HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 EXECUtIVE SUMMARY HOME, wORk AnD MOnEY Around half of respondents who were 26.6% of those on a government benefit working said that HIV has had an impact on had been assessed by a Commonwealth their capacity to perform their work duties. Medical Officer in the past 2 years. While this Most commonly respondents reported resulted in termination of benefits or change § 34.1% were in private rental that they tired more quickly, that they had in conditions for few respondents, it caused difficulty concentrating and that they have distress for 58.9% of those assessed. § 41.5% owned or were purchasing house had to reduce their work hours. 54.6% of PLHIV currently in work had not § 12.8% were in public rental accommodation 28.6% of PLHIV are living below the poverty (government owned) disclosed their HIV status to anyone at their workplace, while 16.1% did not try to line. Just under one quarter of respondents § 3.8% were in community housing/housing keep their HIV status confidential. The most have a partner with whom they share common difficulties for those who do want financial resources and this protects some § 41.2% of PLHIV lived by themselves to maintain confidentiality at work were from extreme economic hardship. Very few § 49.2% of PLHIV lived with pets gossip and explaining absences from work. respondents who are earning an income § 76.1% of respondents had access to a car.
from paid employment reported incomes below the poverty line whereas around half 47.1% of respondents identified their main of those on government benefits are living Just over half of respondents were currently source of income as a government benefit or in paid employment (58.2%), the majority pension. As well, more than one half of PLHIV of these being in full-time work (38.5% of reported experiencing at least some difficulty total sample). The majority of the remainder with meeting the cost of daily living. § 7.4% experienced less favourable described themselves as either not working treatment in relation to accommodation, Difficulty with meeting the cost 2.8% in the last two years of daily living: Most respondents said they had either § 27.6% experienced less favourable § 60.4% difficulty paying for utilities left their career or in some way reduced treatment because of HIV in relation to § 59.8% difficulty paying for clothing their career goals as a result of their HIV health services, 13.0% in the last two years § 59.3% difficulty paying for housing § 23.4 % experienced less favourable § 52.3% difficulty paying for transport treatment in relation to insurance.
§ 52.1% difficulty paying for food.
HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 This section provides an overview of the sample characteristics. Table 2 below shows the years in which respondents tested HIV The data in this section are not weighted. For a full description of the positive and in which they believe they were infected with HIV. project methodology and data weighting algorithms please refer to Overall these patterns match those of the Australian epidemic. There are 98 respondents in the sample who had tested positive in the previous two years (2010-2011/12) and 52 respondents who believe Sample demographics they were infected in the previous year (2011/12). The HIV Futures 7 survey was completed by 1058 HIV positive Table 2 – Years of respondent's testing positive people. Given current estimates of HIV infection in Australia (Kirby and presumed infection (%) Institute, 2012) this represents approximately 4.3% of the HIV positive population. Of the total respondents, 36.5% completed a paper copy of the survey, while 63.5% completed the survey on-line.
Of the survey respondents, 92.9% were male (975), 6.7% were female (70) and 0.3% were transgender (3). This sample consisted of 83.1% gay men, 6.1% heterosexual women, 4.3% heterosexual men, 3.8% bisexual men, 0.1% lesbian women and 0.5% bisexual women. The remaining 2.1% fell into other categories. Respondents ranged in age from 19 to 84 years with a mean of 49.0 years and a median of 49 years. The majority of participants were Australian born (78.2%), were Australian residents (98.1%) and 96.7% of the participants spoke 517 respondents (48.9%) indicated that they were atheist/agnostic, English at home, with Asian and European languages accounting for 34.4% indicated mainstream religious identification and the most of the remainder. remainder indicated that they either had ‘other' (9.9%) or New Age Twenty two respondents (2.1%) indicated they were of Indigenous spiritual beliefs (5.5%). Of those with religious beliefs, 10.3% indicated (Aboriginal/Torres Strait Island) origin. This compares to the that religious beliefs were not important to them, while 40.4% Australian census estimate for 2008 of 2.5% Indigenous status in indicated that these were of little importance, 33.9% that they were the Australian population (Australian Bureau of Statistics, 2012). very important and 15.4% that they were extremely important. Respondents came from all Australian states and territories, with the The educational level of respondents to the survey was somewhat majority coming from NSW, Victoria and Queensland (see Table 1 ) higher than the general population, as is usual in research requiring a moderate level of literacy and engagement with the research process. Table 1 – State or Territory of respondents' residence The educational levels are shown in Table 3 below. Frequency Percentage Table 3 – Educational level of respondents Postgraduate University degree Undergraduate University degree Tertiary diploma/ Trade Certificate/TAFE Leaving certificate/HSC/Year 12 Up to 3 years high school Primary school only The majority (59.4%) of respondents were from urban areas of capital cities, while 14.9% lived in outer suburban areas, 16.0% lived in The remaining findings in this report are for weighted data. In order larger regional centres and 9.7% lived in rural areas. to ensure that the results reported in this document accurately 69.3% of participants were living in the same state or territory in represent the Australian population of PLHIV, comparisons were which they were infected with HIV, while 30.7% reported living in a made to the Australian HIV Surveillance Report (Kirby Institute 2012) different state or territory. and the data were weighted to conform to the demographic profile of the Surveillance Report. A weighting algorithm based on mode of infection, gender, state of residence and diagnosis of AIDS defining illness has been applied to all the analyses that follow. Consequently, findings are presented in terms of sample percentages rather than frequencies. Sample sizes (Ns) are given when the table represents a subset of the total sample. These Ns are weighted. HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 This section of the report deals primarily with the physical health Pre- and post-test counselling/discussion and experience of health of Australian PLHIV. The chapter includes a discussion of the experiences of testing positive for HIV, the current Participants were asked if they had received counselling or had had health status of participants measured both by clinical markers and a detailed discussion with their practitioner prior to being tested self-reported health and well being, the health burden in terms of for HIV. Australia's current HIV testing policy (Department of Health concomitant health conditions and health maintenance strategies. and Ageing, 2006) recommends that health care providers engage the patient in a discussion that, apart from obtaining the individual's informed consent, also assures them of the confidentiality of the test, HIV AntIBODY tEStInG provides accurate information in a culturally and gender appropriate The experience and meanings of testing positive for HIV have way, and assesses the patient's readiness for an HIV test. changed over the history of the HIV/AIDS epidemic. In the early As there has been considerable variability in pre- and post-test guidelines years of HIV in Australia, testing did not offer any particularly great and practices over the years, we have only asked about the experiences advantage in treatment options and often led to increased anxiety, of these for people diagnosed in the two years prior to survey. stigma and discrimination. With the advent of more effective 22.0% of respondents who had tested positive in the previous treatments, the advantages of early testing have become clearer, two years indicated that they had received pre-test counselling not only in terms of medication, but also in health monitoring and or engaged in an HIV test discussion. Regardless of whether they social support. Testing rates remain high among community attached received formal pre-test counselling or engaged in a discussion, most gay and homosexually active men in Australia (over 80%), although (72.0%) were satisfied with the level of support and information they testing is down in Perth and Canberra (NCHSR, 2008).
had before testing. Among those unsatisfied with information or Since November 2005 HIV antibody testing has been available on support many discussed testing that occurred as "routine" associated the Medicare Benefits Schedule and is available free of charge and with other medical procedures, or testing carried out in settings that pre- and post-test discussion are integral to the testing procedure had no experience of HIV. (Department of Health and Ageing, 2006). The national HIV testing policy guidelines (Department of Health We asked respondents about a number of circumstances surrounding and Ageing, 2006) recommends that a post-test discussion be the time that they tested positive for HIV antibodies. provided for all individuals who have had an HIV antibody test, even As can be seen from Table 4, 24.5% of the respondents had taken if the result is negative. The guidelines recommend that a post-test the test as a result of illness, 10.9% as a result of a particular risk discussion following a negative result reinforce HIV education episode and 8.7% because they were a member of a risk group. It is messages about safe behaviours. Positive test results must be interesting to note that 18.9% gave the reason for testing as routine given face-to-face and the discussion which is aimed at managing health screening. the impact of a positive diagnosis on the individual, should help to identify the patient's options for support and to provide them with a Table 4 – Reasons for testing referral to a suitable support agency.
69.9% of respondents who had tested positive in the previous two years indicated that they had received post-test counselling. Most (76.1%) were satisfied with the information and support they received Became ill/ ongoing illness after testing positive. Reasons for dissatisfaction were consistent with Routine health screening those around pre-test experiences. Particular risk episode Doctor's suggestion CURREnt HEAltH StAtUS Partner tested positive Experience of health and general well being Member of risk group We asked respondents how they would best describe their current state of physical health and overall sense of well- being on a four Tested without knowledge point scale. The results are shown in Table 5 and Table 6 below. Close Starting new relationship to half of the sample (45.1%) rated their physical health as good and As part of other test/research 26.3% as excellent. This is less than the Australian population norm reported in the 2007-08 National Health Survey (Australian Bureau of Contact tracer/other health worker's Statistics, 2009) where 84.9% of the population rated their health as good, very good or excellent1. Required to (e.g. for migration) Almost one-third of respondents to HIV Futures 7 rated their health Availability of new treatments as fair or poor (28.6%). 1 It should be noted that the National Health Survey uses a five point scale: poor, fair, good, very good, excel ent. The figure quoted above is for Australians aged 18-64, whereas the HIV Futures 7 sample was aged 18-84.
HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 Table 5 – Respondents' self ratings of general health status HEAltH COnDItIOnS In ADDItIOn tO HIV While there is often uncertainty about whether a particular illness may be related to HIV, treatments or other factors, we offered participants the opportunity to record these conditions within the categories of AIDS defining illnesses (ADI), HIV-related illnesses, major health conditions other than HIV/AIDS and mental health conditions. We asked respondents to indicate whether they had experienced conditions in these categories and to specify the condition and the year in which it was diagnosed. The ratings for wellbeing were of a similar pattern to those for health. Some recoding was undertaken, for example for a condition that Two thirds (62.7%) rated their wellbeing as either good or excellent, did not meet the criteria for ADI, the data were transferred to either while 27.3% rated this as fair and 10.0% as poor. HIV related conditions or other health conditions. Regardless of the Table 6 – Respondents' self ratings of general well-being uncertainty about the aetiology of these conditions among PLHIV (and indeed physicians) we can see that there is a considerable burden of illness that goes beyond HIV infection for a significant proportion of the survey respondents. Participants were also asked to select from a list of 10 HIV-related illnesses those that they had experienced in the 12 months prior to survey. This section will also cover co-infection with hepatitides, attitudes towards body changes and health maintenance activities. AIDS definingillnesses CD4 and viral load The Australasian Society for HIV Medicine (Australasian Society for As with previous surveys, almost all PLHIV had taken a CD4 T-cell HIV Medicine, 2004) lists 26 AIDS-defining conditions in their HIV test (98.3%) and a viral load test (97.8%) in the previous year. management manual. These include opportunistic infections, as well Results for PLHIV's most recent CD4/T-cell test ranged from 10 to as neurological and malignancy disorders. AIDS-defining illnesses 2600 cells/µl with a mean of 634 cells/µl and a median of 600 cells/µl. are notifiable conditions in all states and territories in Australia, and a confirmation of a case requires both laboratory and clinical evidence Results for PLHIV's most recent viral load test ranged from below (Department of Health and Ageing, 2004).
detectable levels to 5,000,000 copies/ml with a mean of 2,772 copies/ml and a median of below detectable level. The category system for defining the stages of HIV disease progression was in large part based on an understanding of the Table 7 shows the combined CD4 and viral load results of the sample. progress of the disease as degenerative with little backwards The results are grouped by three levels of CD4 count: little damage, movement through the categories. There are now numerous HIV moderate damage and severe damage, and four levels of viral load positive people who have at some time experienced an AIDS defining below detectable levels, low, moderate and high. illness but would now be classed at a less severe stage of disease As different assays would have been used to assess the respondents' progression. We asked respondents if they have ever experienced viral loads we have defined below detectable levels as being those an AIDS defining illness for 3 reasons: to match and weight the data responses that were less than 500 copies/ml and those where the according to surveillance data; to examine issues around the burden respondent wrote in zero or below detectable level. of illness; and to understand the current health status of participants. Table 7 – Results of most recent serological tests Around one in five respondents (22.3%) said they had been (percentage of total sample) diagnosed with an AIDS defining illness at some point with 3.3% having been diagnosed with one in the previous two years (2010 to 2011/12). The most common illnesses listed by respondents in this category were Pneumocystis Pneumonia (148 people), Kaposi's Sarcoma (40 people), and Cytomegalovirus (18 people). HIV/AIDS related conditions Over forty percent of respondents (40.6%) indicated that they had experienced an HIV-related illness at some point. Within this group the most common conditions mentioned were dental problems (23.6% of respondents ), shingles (19.3%), and skin problems (such as rashes) (18.0%). In a separate question, participants were asked to select from a list of 12 conditions commonly associated with HIV infection those that they had experienced in the 12 months prior to survey. HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 Table 8 – Health conditions experienced in the past 12 months These are presented in Table 9 (at bottom of page) for both the total sample, and for those who indicated that they had experienced lipodystrophy or lipoatrophy in the past 12 months. As can be seen, approximately equal numbers of the total sample of people agreed Low energy/fatigue and disagreed with the other two items, while the responses of those with lipodystrophy/lipoatrophy were more likely to be suggestive of a poorer body image. Other sexually transmitted infections Strange thoughts or dreams Confusion/memory loss There has been an increase in the diagnoses of sexually transmitted infections (STIs) other than HIV in Australia, and particularly syphilis among homosexually active men (National Centre in HIV Nausea or vomiting Epidemiology and Clinical Research, 2008). Amongst gay men in Weight loss/underweight Sydney, research has found a higher prevalence of some STIs – namely syphilis and anal gonorrhoea among HIV positive men compared to Peripheral neuropathy HIV negative men in Sydney (Jin et al., 2007). A similar discrepancy was observed in rates of syphilis amongst Insulin resistance Melbourne men where the authors estimate that HIV positive men were 4.7 times more likely to be diagnosed with syphilis than Attitudes towards body image negative men (Allen et al., 2008).
Lipodystrophy, a side-effect of treatment, is a significant quality of We asked about sexual health screening, and 73.9% of respondents life issue for people on treatment. Persson (2004) has pointed out reported that they had undergone such a screening in the twelve that the paradox of ART treatments is that while it removes HIV from months prior to survey. We included a question in the HIV Futures 7 the inside, for some, it makes it more visible on the outside, making survey about sexually transmitted infections that participants may the treatment a marker of disease. have been diagnosed with.17.5% said they had been diagnosed with an STI in the previous twelve months.
Positive people who experience lipoatrophy have been found to score significantly lower than HIV positive people without Table 10 – Participants diagnosed with a sexually transmitted lipoatrophy on a quality of life measure (Rajagopalan et al., 2008). infection in past 12 months These quality of life issues can be significant and Lenert et al (Lenert et al., 2002) have found in a study of HIV positive people that most would trade years of life to avoid lipodystrophy.
While there is still some debate over the most appropriate clinical case definition for these conditions, self reported body changes remain an important component of diagnosis (Carr et al., 1999, Behrens et al., 2000). To assess the impact of these we asked participants to respond to a series of statements about their body image.
Table 9 – Attitudes around body image (percentages of total sample, those with and without lipodystrophy) Body image attitude % of total sample % of those without Changes in my body due to HIV/AIDS have made me feel sexually unattractive strongly disagree I am happy with the way my body looks. strongly disagree Body changes due to lipodystrophy make it obvious to others that people have HIV strongly disagree HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 Other health conditions 16 respondents reported that they had completed treatment with 46.0% of respondents indicated that they had a major health interferon monotherapy, while 4 were currently on this treatment condition other than HIV/AIDS. The most common conditions listed and four had started but not completed monotherapy. under this heading were asthma (8.3%), cancer (6.4%), cardiovascular 51 people reported that they had completed combination therapy disease (e.g. high blood pressure) (7.3%), type II diabetes (4.2%), of interferon and ribavirin. 4 were currently on combination therapy hepatitis C (6.0% of the total sample).
and 9 had commenced but not completed therapy.
Hepatitis C co-infected participants were also asked about health monitoring and management. Around one fifth (23.8%) of co-infected PLHIV did not currently see a doctor for hepatitis C Hepatitis is a term that refers to inflammation of the liver. Six different treatment or management, while 48.5% of this group saw their primary types of viral hepatitis have been identified so far. Hepatitis A, B HIV doctor and 27.7% saw a separate hepatitis C doctor or specialist. and C are more commonly known in Australia but hepatitis D, E and G have also been identified. For HIV positive people, co-infection Multiple Hepatitis experience with hepatitis may affect both their health and/or their decisions in relation to antiretroviral treatments. We asked about diagnosis of, Co-infection with a hepatitis virus has important implications for and vaccination against, hepatitis A and B, and some more detailed treatment of both HIV and the hepatitis. Co-infection also results questions about diagnosis and experience of hepatitis C. in increased clinical management particularly around treatment decisions for both conditions, interpretation of clinical markers and the management of adverse consequences of treatment. Around one fifth of the participants (18.0%) had at some point had Figure 1 below shows the percentage of respondents who reported hepatitis A, and 60.6% had been vaccinated against this virus. having ever had at least one of the viral hepatitides. This figure includes those with current infection and those having had it in the past, having reported clearing the hepatitis B virus or testing negative on a PCR test for hepatitis C. Of those for whom data was available A total of 18.9% of respondents had at some time been diagnosed on all three viruses, 19.6% had experience of one form of hepatitis with hepatitis B. Of these, 71.0% had cleared the infection, 13.4% had infection, 13.8% of two forms and 1.8% had experienced all three. an ongoing infection and 5.2% had a chronic infection. In addition to those who had experienced hepatitis B infection, 68.9% had been Figure 1 – Multiple hepatitides (percentage of respondents) vaccinated against this virus. Around one quarter (28.4%) of respondents had not been tested for hepatitis C. 80.2% of the most recent hepatitis C antibody tests were taken in the previous two years and 13.7% of participants' first hepatitis C antibody tests were taken in this period. We asked respondents if they had ever had hepatitis C, and 15.7% (N=159) said that they had. Of these, 59 people (39.2%) said they had since received a negative PCR test. When asked how they believe they were infected with the hepatitis C virus, 46.5% said injecting drug use, 27.6% during sex, 5.7% blood transfusion or the receipt of blood products, and 1.8% through tattooing. 6.9% of respondents did not know how they were infected. Table 11 – Respondents' reported mode of hepatitis C infection (percentage of those with hepatitis C) Mode of infection Injection Drug Use (IDU) Blood transfusion/ Blood products HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 Table 12 – Attitudes to health management (percentage of total sample) Mental health issues continue to figure large in discussions of the needs and status of positive people in many parts of the world. Attitudes to health management While a survey like this cannot expect to offer a clinical perspective on mental health status, we can give an overview of some of the Looking after my physical experiences of positive people that fall within the broad area of fitness is an important part of mental well-being. managing my HIV infection In a study of major depressive illnesses among HIV positive and strongly disagree negative gay men in Sydney and Adelaide, Mao et al (2009) found that gay men generally were at high risk of depression whatever Healthy eating is an important their HIV status. While being HIV positive was not independently part of managing my HIV associated with an increased risk of depression, positive men had higher rates of depression associated with factors such as socio- strongly disagree economic deprivation, isolation and withdrawal.
Psychiatric medications Keeping an optimistic frame of mind is an important part of managing HIV infection In the six months prior to completing the survey, 34.8% of PLHIV said they had taken medicines prescribed for depression. This is likely strongly disagree to come out as considerably higher than the 5.9% of the Australian population who reported having taken antidepressants in the As long as I am well I prefer not strongly agree previous 2 weeks in the National Health Survey (Australian Bureau of to think about HIV/AIDS Statistics, 2009). Diagnosis of a mental health condition strongly disagree We asked respondents if they had been diagnosed with a mental Life has become more health condition and 48.1% reported that they had had such meaningful since I became HIV agree a diagnosis. Of those reporting a diagnosis, the vast majority had been diagnosed with depression (87.5%, 41.5% of the total sample). strongly disagree 17.2% of people receiving a diagnosis of depression reported having received this diagnosis in the previous 2 years. Other health monitoring The next most common condition was anxiety, reported by 57.7% of those with a mental health condition (27.4% of the total sample). 20.2% We asked a series of questions about other health monitoring of those reported having received this diagnosis over the past 2 years.
activities. 21.3% had had a bone density test in the last two years and 14.4% had had a test more than two years ago. 70.2% had had HEAltH MAIntEnAnCE a fasting cholesterol test in the last two years and 7.4% had had one more than two years ago. Attitudes to health management 84.8% had had their blood pressure taken in the previous two years and 18.6% had elevated blood pressure. The long term effects of Participants responded to a number of statements about health living with HIV and medication have made health concerns such management in relation to health improvement strategies, as high cholesterol, cardiovascular difficulties and osteoporosis antiretroviral therapies and complementary therapies. The items increasingly important for positive people.
on antiretroviral and complementary therapies are presented in the relevant sections of the report. 37.1% of all respondents had had an anal pap smear, 64.6% of these in the previous year. 98.3% of female respondents had ever undergone a cervical When asked about health management strategies, almost all smear (Pap) test and 93.2% said they had taken one in the previous two participants agreed that exercise; healthy eating and an optimistic years. Of those who had taken a pap test in the twelve months prior to outlook were important or very important strategies (see Table 12). survey, most (80.8%) reported that the result was ‘normal'. Those who indicated that they exercised and ate well were more likely to agree with the respective statements.
HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 COMPlEMEntARY tHERAPIES Table 13 – Use of complementary therapies in the past six months (percentage of total sample) We asked participants if they had used any complementary therapies in the previous six months, including therapeutic use of marijuana, Complementary therapies and to indicate the types of therapies used and where these products or services were obtained. In order to gain an overall picture of the use of these modalities, the question asked participants to indicate all complementary therapies they had used, not only those used for HIV/AIDS. Over three quarters of respondents (73.2%) indicated that they had used some kind of Marijuana for therapeutic purposes complementary medicine or therapy in the previous six months. Over half of the sample (62.5%) had taken vitamin or mineral supplements. Over one-third (32.8%) of respondents had used Traditional Chinese Medicine massage, while 19.9% had used meditation. Around one-fifth (Multiple responses possible) (16.5%) of respondents indicated that they had used marijuana for therapeutic purposes.
HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 In this chapter, we report on the treatment experiences of PLHIV. Table 14 – Antiretroviral drugs used by respondents: As antiretroviral treatments are the main way that HIV is managed percentage of those currently using ARV therapeutically, we focus on participants' experiences of these, but also include a description of the medications that participants take Nucleoside Reverse Transcriptase Inhibitors (NRTIs) for other health conditions.
Lamivudine (3TC, Epivir) AntIREtROVIRAl tHERAPY Abacavir ,1592 (Ziagen) Stavudine, d4T (Zerit) Highly active antiretroviral therapy remains the single factor that has Zidovudine, AZT (Retrovir) most altered the clinical outcomes for people living with HIV.
Didanosine (ddI, Videx, Videx EC) The introduction of ARV has reshaped the HIV epidemic in developed countries, and is increasingly doing so in developing Zalcitabine, ddC (Hivid) nations and resource poor settings. Emtriva (Emtricitabine, FTC) In the thirteen years in which these treatments have been available, Non-Nucleoside Reverse Transcriptase Inhibitors (NNRTIs) there have been improvements in the efficacy and tolerability of treatments, while new combinations of drugs have simplified the Nevirapine (Viramune) drug-taking process for PLHIV. Efavirenz (Sustiva, Stocrin) Nevertheless, being on antiretroviral therapy involves a highly Etravirine (Intelence) structured protocol that requires medication to be taken at specific Delavirdine (Rescriptor) times. Treatment can also result in difficult to manage side-effects. In the following section we examine some of these challenges as well Nucleotide Analog Reverse Transcriptase Inhibitors as the psychological and social impacts of treatment. Tenofovir (Viread) Of the full sample, 91.0% had used ARV at some point, and 87.3% were currently using these treatments. A summary diagram of the Protease Inhibitors uptake of antiretrovirals can be found below.
Ritonavir (Norvir) Those currently using ARV Atazanavir (Reyataz) Saquinavir (Invirase, Fortovase) The majority of participants are now taking one of the preformulated combinations (Atripla, Truvada, Combivir, Trizivir or Kivexa ) either Nelfinavir (Viracept) in conjunction with another treatment (N=486) or not (N=243). Indinavir (Crixivan) Among those on combinations of individual drugs (N=157), the most common combination was one PI and one NNRTI (21 people), Telzir (fosamprenavir) followed by one PI and an NRTI1 (5 people). Amprenavir (Agenerase) Figure 2 – Use of Antiretroviral Therapy Kaletra (Lopinavir + Norvir,)3 Prezista (Darunavir, DRV) Combination Medications Atripla (Efavirenz, Emtricitabine and Tenofovir) CURREntlY USInG ARV Truvada (Tenofovir, Emtricitabine) AZT & 3TC (Combivir) AZT & 3TC & Abacavir (Trizivir) at some point in 71.6% (N=648) of Kivexa (abacavir and lamivudine) (N=250) of those Celsentri (Maraviroc, MVC) Isentress (Raltegravir, RAL) Note: Ns and percentages may be reduced due to missing data 3 Kaletra is counted as 2 protease Inhibitors in calculation of drug combinations, but is listed here under PIs as both drugs are in the same category.
HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 Difficulties of taking ARV Health status of those using ARV 37.6% of participants who were currently on antiretroviral treatment As expected, those taking ARV had markedly lower viral loads. As said that they had some difficulty being on treatment. The most Table 17 shows, the overwhelming majority of respondents who were common problems that participants experienced were remembering on ARV had an undetectable viral load at their most recent testing. to take the drugs on time (21.3%) and managing the side effects of medication (21.3%). Difficulties transporting their medication (13.8%) Table 17 – Viral loads of those taking and not taking antiretroviral and taking medication in public (9.9%) were the next most common therapy (percentage within rows) difficulties that participants reported. VIRAL LOAD ON MOST RECENT TEST Table 15 – Difficulties of taking ARV among those currently using ARV (percentage of those on ARV) Difficulties of taking ARV Remembering to take drugs on time (3,2) = 469.869, p<0.001 Organising meals around medication Those taking ARV and those who had never taken it were more likely to have a CD4 count over 500 than those who had previously. Taking medication in public Taking a large number of tablets Table 18 – CD4 of those taking and not taking antiretroviral therapy ARV drugs make it difficult to take medication (percentage within rows) for other health conditions CD4 ON MOST RECENT TEST Medication taken for other health conditions makes it difficult to take ARV (Multiple responses possible) Attitudes to ARV Half of respondents were concerned about the future efficacy of their χ 2 (2,2) = 12.571, p=0.014 treatments: 46.5% agreed or strongly agreed with the statement "I Those who have never taken ARV were less likely to have had an AIDS am worried that in the future my medication will stop working for me". defining illness (1.1% compared to 24.8% among those currently taking When asked to respond to the statement "Taking tablets gives me an antiretroviral treatments and 20.5% among those currently not taking unwanted reminder that I have HIV", 57.6% indicated agreement and antiretrovirals ). 40.6% indicated disagreement.
When asked to rate the effect of commencing ARV on their physical Table 16 – Attitudes to medication: health, 47.8% said that their health improved, 24.0% said it had percentage of those currently using ARV fluctuated, 22.3% said it had stayed the same and 5.9% said it had deteriorated.
Strongly Disagree When asked about the impact of ARV on their overall feeling of well- I am worried that being, 41.1% said it had improved, 30.1% said it had fluctuated, 22.2% in the future my said it had stayed the same and 6.6% said it had deteriorated. medication will stop working Figure 3 – Effect of commencing antiretroviral medication on health and wellbeing (percentage of those taking ARV) Taking tablets gives me an Wellbeing  Health reminder that I have HIV HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 tHOSE nOt CURREntlY tAkInG ARV AttItUDES tO AntIREtROVIRAl tHERAPY Of the 12.7% of the sample who were not using any antiretrovirals, Antiretroviral treatments have an impact on many parts of people's 28.9% (N=38) had done so in the past. At the time that they stopped lives, not just on their physical health. As in previous surveys, we using ARV, most were using a combination of 3 drugs. asked respondents to respond to a series of statements about treatments. These fall into three broad areas: decision making around Reasons for stopping ARV treatment treatments, relationship with their doctor, and optimism about Just as the side effects of medication was one of the main difficulties treatments. These findings can be seen in Table 20 below. that participants on ARV experienced, this was the most common Treatment decision making reason that those who were not currently on treatment gave for stopping ARV therapy (18.1%). Most respondents indicated that they disagreed with the statement A sizable number (15.4%) also said that they had stopped treatment I am healthy now and don't need to use antiretroviral drugs (81.7%). because their doctor had recommended it. (See Table 19).
Those who agreed with this statement were more likely to be those not currently using any antiretroviral drugs and who rated their Table 19 – Reasons for stopping ARV among those who have physical health more positively. stopped ARV treatment Relationship with doctor Difficulties of taking ARV As with previous surveys, most respondents (88.3%) agreed with the statement My doctor and I work together to find the best treatment for me, with few expressing uncertainty. Most respondents Recommended by my doctor (82.5%) agreed with the statement My doctor knows more about the Difficulty organising meals around medication treatment of HIV than I do. Difficulty taking medication in public Treatment optimism Taking part in a clinical trial Optimism about the value and effectiveness of antiretroviral Difficulty taking a large number of tablets treatments continues to characterise the Australian experience, but Difficulty carrying/transporting medication tempered as always with concerns about the impact and long term effectiveness of these treatments. (Multiple responses possible) Only 4.3% of respondents agreed with the statement Combination antiretroviral drugs are ineffective. This belief in effectiveness is Those who have never used tempered by an awareness of the potential harm of these therapies antiretroviral drugs as evidenced by the agreement with the statement that Combination drugs are harmful (19.1% agree, 5.8% strongly agree). 9.0% (N=94) of the respondents had never used antiretroviral treatments. This harm may in part be that experienced as side effects. Around Of these 86.1% said they would consider using antiretroviral drugs in one in five (29.2%) respondents agreed or strongly agreed with the statement The side effects of antiretroviral drugs outweigh the benefits, while 9.5% were unsure.
Table 20 - Attitudes to antiretroviral drugs: percentage of total sample Attitudes to medication I am healthy now and don't need to use combination antiretroviral drugs Combination antiretroviral drugs are harmful Combination antiretroviral drugs are ineffective New treatments will be developed in time for me to gain benefits HIV treatments will stop me dying from AIDS My doctor knows a lot more about the treatment of HIV than I do My doctor and I work together to find the best treatment for me The side-effects of antiretroviral drugs outweigh the benefits Medical treatments for HIV/AIDS make safe sex less important than it was Undetectable viral load means HIV is unlikely to be transmitted to a sexual partner even if I have sex without a condom HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 There was considerable uncertainty about the long term benefit of Table 21 – Lifestyle reasons for taking breaks (percent of those treatment. 21.8% of respondents said they were unsure when asked taking breaks and percentage of those taking a break in the to respond to the statement New treatments will be developed in previous 2 years) time for me to gain benefits, with most of the remainder agreeing. Lifestyle reasons for taking breaks Similarly, 17.6% were uncertain when asked if HIV treatments will stop taking years (n=41) me dying from AIDS. Agreement with this statement was indicated by 63.7% of respondents. In addition to these items, respondents were asked to indicate how much they agree with the statement Antiretroviral drugs mean better Clean out my system prospects for most people. Most (86.3%) agreed with the statement. It didn't fit my lifestyle Figure 4 – Respondents' response to the statement Antiretroviral Taking drugs at the right time was too drugs mean better prospects for most people difficultThe financial burden became too heavy (Multiple responses possible) It's too soon to tell When asked if there was a clinical reason for taking the break, 38.5% of those that had taken a break indicated that there was. Of those taking a break in the previous two years, 30.8% said there was a clinical reason.). Table 22 below details the clinical reasons for breaks. The most commonly cited reason was that the side effects of treatment became too severe (17.5% of all those taking breaks), 11% indicated that the break was on the recommendation of their doctor. Table 22 – Clinical reasons for taking breaks (percent of those taking breaks and percentage of those taking a break in the previous 2 years) Treatment breaks may take a number of forms and be undertaken for a range of reasons (Grierson et al., 2004b). While there is Clinical reasons for taking breaks taking years (n=19) considerable discussion in the medical community about the potential benefits and dangers of treatment interruptions, our main emphasis is on the motivations, experiences and consequences of Side effects became too severe breaks for HIV positive people. To understand the experience of Recommended by my doctor breaks, we asked respondents to give us some detailed information Drug resistance developed about their most recent break. Changing regimens In all, 27.9% of those respondents currently using antiretroviral medication had taken a break from these at some point. Liver toxicity problems Taking part in a clinical trial Most recent treatment break Recommended by other health professional The date of the commencement of most recent treatment break Complications with Hep C was provided by 88% of those that had ever taken a break. Of these 24.8% had taken their most recent break in the two years prior to survey and 16.7% in the previous one year. (Multiple responses possible) We asked participants to describe the reasons for taking the break We also asked about the involvement of the participant's doctor within two major categories: lifestyle and clinical reasons. in these breaks. Participants were less likely to have talked to their A discussion of the differences between those who take treatment doctor about the break prior to taking it (58.3%) than they were breaks for lifestyle reasons and those who take breaks for clinical during the break (57.2%) or afterwards (90.7%). reasons can be found in our article on this topic (Grierson et al., For those taking a break in the previous two years, fewer talked to 2004b). Just under half (52.3%) indicated that there were lifestyle their doctor about the break prior to taking it (28.2%) during the reasons for taking a break. break (42.2%) and afterwards (82.0%). Of those taking a break in the previous two years, 65.8% said there We were also interested in the outcome of the treatment breaks, was a lifestyle reason. The specific reasons are given in Table 21 both in terms of clinical markers and experience of health and below. The most common reason given was travel (17.8% of those well-being. Around two fifths of respondents said that their health taking breaks) followed by to clean out the system (16.3%). remained stable, 27% said their health worsened, while 20% reported fluctuating health and 12% improved health. When asked about their general well-being, a similar proportion said that it had remained stable (35.8%). HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 Table 23 – Effect of break on health and well being Table 25 – Number of times participants take medications (percentage of those taking break and percentage in last 2 years) (for those taking class of medication) Effect of break on Antiretroviral drugs Complementary therapies Medication for other health Participants who were currently using antiretroviral medication were The impact of these breaks on clinical markers was less positive. The asked over the past month, what percent of the time they were able to majority of respondents indicated that their viral load had increased, take their antiretroviral medications exactly as the doctor prescribed and their CD4 count had decreased as a result of the break. These them. 49.9% said 100 percent of the time, 79.8% said at least 90 data are presented in Table 24.
percent and 86.9% said at least 80 percent. Only 7.4% said less than 50 percent of the time. Table 24 – Effect of break on viral load and CD4 (percentage of those taking break) Change in viral load due to break We asked participants who prescribed their antiretrovirals. In recognition of the multiple prescribing sites people utilise, Decrease (improve) respondents were able to nominate more than one source. Over half (53.4%) of PLHIV got their prescriptions for antiretroviral drugs from a GP who specialises in HIV/ S100 prescriber. Increase (worsen) A smaller proportion (26.5%) obtained their prescription from a specialist in an outpatient clinic, while fewer obtained them from Change in viral load due to break a doctor at a sexual health centre (22.7%), another GP (1.2%), or from a HIV specialist while an inpatient (2.9%). Increase (improve) Overall 69.2% were satisfied with their current prescribing arrangement, with many indicating a preference for using a local pharmacy to collect medication, rather than the more limited arrangement currently in place. Decrease (worsen) DOSInG AnD ADHEREnCE Adherence to the antiretroviral treatment regime is important for treatment to be effective and to prevent the development of resistance to medications. The degree of adherence required is far greater than that of other health conditions. It is estimated that for the majority of people on antiretroviral treatments, adherence of more than 95% is necessary for successful viral suppression and immune response (Chen et al., 2007).
While the consistency of adherence directly affects the health outcomes for PLHIV, many factors can have an impact on consistency. These include the complexity of the drug regime, a person's emotional well being, the management of side effects, lifestyle fit, and communication with friends and doctors (Beusterien et al., 2008). One study has found that adherence consistency tends to decrease over time (Mannheimer et al., 2002) Respondents were asked the number of times they took a range of medications per day. On average, PLHIV were taking medication twice a day (range 0 to 23, median=2). The number of times they were taking specific types of medication is shown in Table 25 below. 48.9% of the sample were taking ARV twice daily, 2.2% three times a day and 47.1% once a day.
HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 This section discusses the engagement of PLHIV with a range of Table 27 – Percent of respondents who use services through services. A key component of the Australian response to HIV has HIV/AIDS organisations been the establishment of HIV specific services, both within health systems (specialist HIV wards in hospitals, high HIV caseload general practitioners and sexual health services for example) and through community and volunteer organisations. There has also been Social contact with other PLHIV considerable energy expended on sensitising mainstream services to issues specific to HIV/AIDS and the affected communities. Treatments advice Pharmacy services Financial assistance We asked respondents to identify the physician they see for the clinical management of their HIV and for general health issues. HIV GPs (S100 Prescribers) were the key physicians for both HIV specific and general health management. HIV specialists were also (Multiple responses possible) the primary providers for a significant proportion of PLHIV. The distinction between these categories reflects the different healthcare systems in different states and territories, and the availability of these physicians in regional areas. HIV GPs were more likely to be One of the most distinctive characteristics of the HIV/AIDS epidemic nominated as the primary provider of both general and HIV-related has been the degree to which those infected with the virus have treatment by those living in the inner suburbs of capital cities, than become highly active health consumers. those living in the outer suburbs, regional centres or rural areas. This is reflected not only in the emergence of a strong community Combined, HIV GPs and specialists were the primary physicians for sector and advocacy structure, but also in the way in which individual 78.3% of respondents for HIV specific management and for 55.0% of positive people actively engage with their healthcare providers and respondents, for general health management. actively seek out a diverse range of information on clinical and social Table 26 – Physician used for general and HIV related treatment: aspects of the virus and the epidemic. percentage of total sample Clinical information and most specifically information on the efficacy and consequences of treatment in the HIV/AIDS area is not the sole province of health professionals. In the previous HIV Futures surveys and in other research we have HIV GP/S 100 Prescriber conducted, we have demonstrated that positive people access information on HIV treatments, management and social aspects from a range of sources including the medical literature, the community sector, health professionals and peers. Doctor at sexual health centre Respondents were asked to nominate from a list of potential sources, those that were important sources of information on HIV including 52.2% of respondents said that the doctor they saw for general treatments management, and living with HIV. medical services was the same doctor they saw for HIV-related treatment. Of those who saw a different doctor, 97.5% said that that Table 28 – Sources of information about treatments doctor knew their HIV status. and living with HIV (percentage of sample) Services used at HIV organisations Participants were asked whether they were currently using a range of services through an HIV/AIDS organisation. Social contact with HIV Doctor (specialist or HIV GP/S100 prescriber ) other PLHIV was the most commonly cited use with over one quarter Publications from HIV or AIDS groups of respondents selecting this item. HIV/AIDS organisations were also used for counselling, treatments advice, and pharmacy services by substantial numbers of respondents. HIV or AIDS community organisations (for example, Positive organisations, AIDS Councils etc.)Social sources (HIV-positive friends, other friends, family etc.)Other healthcare professional Publications from other sources (Multiple responses possible) HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 Information about HIV treatment Table 30 – Issues where participants lack information (percent of total sample) When asked in a separate question to nominate their most important sources of information about treatments and health management, 77.7% of respondents nominated their HIV doctor (GP or specialist) Managing ARV side effects as the most important source, followed by the internet (7.6%). Interaction between ARV and other drugs Information about living with HIV Financial planning When asked to identify the most important sources of information about living with HIV, 32.2% nominated their HIV doctor (GP or specialist), and 20.7% said HIV or AIDS community organisations . Using complementary therapies Table 29 – Most important sources of information about treatments and living with HIV (percentage of sample) Taking a break from ARV Most important sources Recreational drug use (Multiple responses possible) (specialist or HIV GP/S100 prescriber )Internet InVOlVEMEnt wItH AIDS ORGAnISAtIOnS HIV or AIDS community organisations (for example, Positive organisations, AIDS Participants were asked about their involvement with HIV/AIDS organisations. 65.0% of the sample had some contact with HIV/AIDS organisations. Publications from HIV or AIDS groups Of these, 63.8% received newsletters and mail outs, 54.1% were Publications from other sources clients, 45.8% were members, 35.8% accessed information on Other healthcare professional websites, 14.5% were volunteers and 7.9% were employees. Of those that volunteered, they did so for between 1 and 45 hours per week (median = 4 hours/week).
(HIV-positive friends, other friends, family etc.) Lack of information We asked respondents whether lack of information made it difficult for them to make decisions in certain areas and over a quarter (28.7%) agreed that this was the case. When asked to identify the domains in which this applied, employment and financial planning also figured prominently, with 13.0% of respondents identifying lack of information about work/employment and 12.4% financial planning. In the clinical realm, 14.8% nominated the management of side effects, while 13.8% nominated interactions between ARVs and other drugs Information about complementary therapies was identified by 12.3%.
HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 The Social World of PLHIV This chapter examines the collective experience of HIV from a number of perspectives. While for some people HIV may be a profoundly isolating experience, within Australia the experience Respondents were asked who they had disclosed their HIV status to of HIV has been overwhelmingly a collective one. (see Table 32). Not surprisingly, most (79.9%) had disclosed to close friends, and most (90.2%) of those in relationships had disclosed to HIV is not only experienced by individuals, but also by communities and social networks. HIV identity is managed though contact with other positive people, through the disclosure of status, both willingly Within families, people were most likely to have disclosed to siblings and unwillingly, and through engagement with the community sector. (55.8%) although many had disclosed to parents (43.9%). Only 3.8% Here we explore some of these issues through the experiences of the had not disclosed their HIV status to anyone. respondents to this survey. Table 32 – People the respondent has disclosed their HIV status to COntACt wItH OtHER PlHIV People the respondent Very few HIV positive people (8.0%) did not personally know anyone else with HIV. Gay men were significantly less likely to know no-one else with HIV than other respondents. Most positive people had an HIV positive friend (73.2%) and many had either an HIV positive partner or ex-partner (15.0% and 25.1% respectively). 15.5% of respondents had been involved in the nursing or care of another positive person at some time in the last two years. Table 31 – Other HIV positive persons known by respondent People from own ethnic community Acquaintance/Member of support group Former partner/spouse Specific sub-populations Partners (% of those in a regular relationship) Work colleagues (% of those currently employed full time) Work colleagues (% of those currently employed part time) Online friend or buddy Son/daughter (% of those with children) (Multiple responses possible) (Multiple responses possible) Unwanted disclosure Two thirds of the respondents spent at least some time with other Respondents were asked if their HIV status had ever been disclosed positive people (70.9%). The 12.4% who indicated that they spend a without their permission. 52.8% said that it had at some point, and lot of time with other PLHIV were more likely to be those who work 25.4% said that this had happened in the previous two years. or volunteer for an HIV/AIDS organisation. When asked if this disclosure had a negative effect, 67.5% said it Figure 5 – Time spent with other positive people had. When asked who disclosed their status, they were most likely to nominate friends. (see Table 33). In part these data reflect those that are most likely to be aware of the respondent's HIV status. HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 tHE SOCIAl wORlD Of PlHIV Table 33 – Sources of unwanted disclosure A rating of 'essential' indicates that the characteristic is an essential (percentage of those experiencing unwanted disclosure) component of the individual's identity. A rating of 'important' indicates that the characteristic plays a large Percent of those who have Percent of those who have ever experienced unwanted experienced unwanted part in how PLHIV see themselves, but may have greater or lesser disclosure (N=542) disclosure in the last 2 years relevance depending on the context.
A rating of 'not important' indicates that the characteristic only has very context specific relevance and does not generally enter into their self-image. A rating of 'irrelevant' indicates that the characteristic plays no part in their self-image. While our primary focus in this area was on the importance of HIV identity, we have included other characteristics, both as points of comparison and as a way of more fully describing PLHIV. The characteristics examined were sexuality, gender, recreational drug use, ethnicity, parenthood and career. Almost half (48.9%) of positive people in this study considered their healthcare setting HIV status an important, but not essential aspect of their make-up, while 17.5% considered it to be an essential characteristic. This is in contrast to sexuality and gender, where around 30% of the sample considered each of these to be essential characteristics. Staff/volunteers We asked participants about the amount of social support they received from a range of sources including household members, social contacts and service providers.
People from ethnic The ratings are shown in Table 35 below with those for whom the category was not applicable excluded from each row. Participants were most likely to have nominated their partner or spouse as (Multiple responses possible) providing a lot of support (77.8% of those with partners), followed The place of HIV in people's lives by their pets (63.0% of pet owners). Around half of participants also received a lot of support from their doctors (43.9%) and close HIV affects many parts of people's lives in both positive and friends (43.6%).
negative ways. Knowledge of one's HIV status can be something that dominates some people's sense of who they are, while for others it Table 35 – Social support received from different sources: will be a minor facet of their self-image. These different experiences percent who gave valid responses for each category of HIV status can have significant implications for the provision of services and the targeting of education for positive people. Importance of personal To explore this issue, we asked When you think of all the things that make you who you are, how important are each of the following aspects of yourself? The categories and results are given in Table 34.
Table 34 – Importance of personal characteristics to respondents' sense of identity Essential Important HIV positive friends Health care workers Religious beliefs Religious or spiritual Drug use (rec/illegal) HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 tHE SOCIAl wORlD Of PlHIV When we examine the sources that people rated as providing no RElAtIOnSHIPS AnD SEX support, the highest ranking category was volunteer carer, where 59.3% of those with a carer said they received no support from them. In this section we discuss a range of issues to do with the sexual lives Religious or spiritual advisors were also considered a source of no and intimate relationships of PLHIV. While there is some attention support for 47.9% of those with such a source. paid to sexual practice, our intention is not to characterise PLHIV as a group posing a risk of HIV infection to HIV negative people. To Participants were more likely to have rated a source as supportive if this end, we have taken care to characterise the HIV risk reduction they had disclosed to them for all categories (except pets). strategies employed by HIV positive people in sexual relations. Attitudes to HIV status We have also attempted to address other aspects of sex and relationships that are all too often absent from the literature in this Two additional items were included that examine individual's area. This includes issues of sexual pleasure, the establishment of relationship to their HIV serostatus. Participants were asked whether relationships and the consequences of community stigma for both they agreed with the statement As long as I am well I prefer not to sexual lives and other intimate relationships.
think about HIV/AIDS. Over half the respondents agreed or strongly agreed with this statement. The second statement participants were asked to respond to was Life has become more meaningful since I became HIV positive. 43.8% agreed or strongly agreed with this Respondents were asked about current sexual relationships. The statement. See Table 36 below results are presented in Table 37 below. Over one quarter of the sample said that they had no sex at present. Table 36 – Attitudes to HIV status A similar though smaller proportion reported that they had a regular Attitudes to HIV status relationship only, while slightly more said that they had casual sex only, and slightly fewer that they had a regular relationship plus As long as I am well I casual sex. When this item is broken down by sex and sexuality, we prefer not to think about find significantly different patterns between three groups of PLHIV. Heterosexual men were more likely than other PLHIV to report that Life has become more they had no sex at present. meaningful since I Table 37 – Type of sexual relationship(s) by gender became HIV positive and sexuality of respondent (percentage) Planning for the Future Attitudes to HIV status A core concern of the HIV Futures surveys is how people with HIV view their future, particularly how far into their future they plan. One fifth (19.7%) planned their life one day at a time and 27.0% planned I have no sex at present only a few months ahead. Over half of the respondents planned for at I have casual sex only least a year with 20.0% planning one year ahead, 21.9% planning five I have a regular years ahead and 11.4% planning ten years or more ahead. relationship with one This profile of the population has changed very little since the first person, and I have sex HIV Futures survey. Those with longer time frames tend to be those with other people who have been HIV positive for a shorter period, have lower viral I have a regular load, higher CD4 counts, and have not had an AIDS defining illness.
relationship with one person, and I do not have Figure 6 – Time frame for future planning sex with other peopleI have a regular 10 or more years relationship with two or more people Women were more likely to report that they had one regular sexual partner and no casual sex. Gay and bisexual men are more likely to report that they had a regular sexual partner and also had casual sex. When asked if they were currently in a regular relationship, around two fifths (41.7%) said they were. This is slightly higher than the proportion of the sample that report having sex with a regular One day at a time partner in Table 37 above (38.6%), as some in a regular relationship did not have sex. 5% 10% 15% 20% 25% 30% HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 tHE SOCIAl wORlD Of PlHIV Regular partners Of those in a relationship with a regular partner, 40.6 % reported that that used condom their partner was also HIV positive (generally described as a sero- concordant relationship). The remainder were in serononconcordant Female respondents relationships. This remaining group is made up of 57.7% of those in relationships that report that their partner is HIV negative (a With regular male serodiscordant relationship) and 1.6% who report that they don't know their partner's HIV status. Nearly all PLHIV (97.5 %) had told their regular partner that they were HIV positive. With regular male We have reported the data in the following tables on sexual practice and condom use in numbers rather than percentages, as the small sub-samples would give an inflated view of the proportions in some categories. PLHIV in regular relationships were asked about the sex they had with their regular partner. Overall, 28.3% of the total sample had anal or vaginal sex with a regular male partner in the six months Almost half (48.2%) of the sample reported that in the six months prior to completing the survey and 3.2% had anal or vaginal sex with prior to completing the survey they had had sex with one or more a regular female partner in the previous six months. Condom use casual partners. When asked the HIV status of their casual partners, with regular partners can be seen in Table 38 below.
11.8% reported that all of their casual partners were HIV positive, 51.1% Table 38 – Condom use in penetrative sex with regular partner by reported that some of their casual partners were HIV positive, and respondent and partner gender 6.1% reported that none of their casual partners were HIV positive. Many (30.9%) of the respondents who had had casual sex reported that used condom that they did not know the HIV status of their casual partners. Respondents were asked about their condom use during anal or vaginal intercourse with casual partners over the previous six months.
Female respondents N=49 With regular male Table 40 – Condom use with casual partner by respondent and partner gender Male respondents N=273 With regular male that used condoms Female respondents With regular male If we look at these data in terms of relationship sero-concordance, considerable clarity is given to the patterns of condom use.Unprotected With regular male vaginal or anal intercourse is more likely to have occurred in sero- concordant relationships than in sero-nonconcordant relationships.
Table 39 – Condom use with regular partner by respondents' gender, partners' gender, and partners' sero-status As can be seen from Table 40 there are considerable variations in condom use when we examine this by sex of respondent and sex of that used condom partner. Again, when we look at these data in terms of the partners' HIV status, a clearer pattern emerges (see Table 41). Table 41 – Condom use with male casual partner Female respondents by partners' sero-status With regular male that used condoms With regular male Casual partners' HIV Status There is a significant relationship between condom use and partners' HIV status: consistent unprotected anal and vaginal intercourse occurs primarily with HIV positive partners, whereas with HIV negative partners or those of unknown status, condom use was much more likely. HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 tHE SOCIAl wORlD Of PlHIV In addition to reporting on their overall patterns of condom use, on the HIV status of the partner. Figure 7 gives a breakdown of the respondents who had had casual sex reported on their most recent range of protective strategies employed by positive people to protect sexual encounter with a casual partner. Almost half the survey their most recent casual partner. (47.8%) respondents provided such information. Of the respondents This includes knowledge of HIV status, condom use and avoidance who had casual sex, 77.2% had vaginal or anal intercourse on their of ejaculation within their partner. This schematic shows that for the last occasion with a casual partner. entire set of data available, incidents that involved any risk were very As was found for the overall patterns of condom use, condom use rare and mostly associated with partners of unknown status. during respondents' most recent sexual encounter was contingent Figure 7 – Sexual practice with the most recent casual partner Sex with a casual partner in the last six months? Anal/vaginal intercourse with the casual partner? (missing=46) HIV status of casual partner (missing=2) Condom used? (missing=8) Ejaculated in partner? (male respondents only) Ejaculated in by partner? HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 tHE SOCIAl wORlD Of PlHIV HIV, sex, relationships and treatments agreed with the statements I feel more confident about unprotected sex because of the new treatments; Withdrawing before ejaculating PLHIV were asked to respond to a number of statements about (cumming) is a way to reduce the risk of passing on HIV; and relationships, sex and HIV. The results of these items are shown in full Undetectable viral load means HIV is unlikely to be transmitted to a sexual partner even if I have sex without a condom. Greater concern When asked whether they would prefer to be in a relationship with on these items was expressed by those with HIV negative regular someone who is also HIV positive, around half (53.7%) said they partners, those having only casual partners and those not currently would, a third (32.2%) said they would not, and the remainder (14.1%) said that they did not know. The response to concerns about re-infection remains mixed, with The potential to develop new relationships remains an important 44.0% agreeing that I am concerned about becoming infected with issue for PLHIV. While much has been done to reduce stigma and another strain of HIV and 46.2% disagreeing. discrimination in formal settings such as workplaces and healthcare When we examine the impact of HIV on sexual pleasure, we find that settings, the more intimate domains of sex and relationships can the majority of the respondents (61.7%) agreed with the statement still be a site of anxiety and uncertainty for both HIV positive and HIV has had a negative effect on my sexual pleasure. One third negative people. (33.8%) disagreed with this statement. Over two thirds (68.8%) of the respondents agreed with the When asked about the relationship between partners' HIV status and statement Few people would want a relationship with someone who sexual pleasure here was a greater degree of uncertainty. 18.6% were has HIV. A similar response was found to the statement I am afraid of unsure when asked to respond to the statement If I know that my telling potential partners of my HIV status in case they reject me. Over partner is HIV positive I find sex more pleasurable. More respondents half the respondents (60.0%) agreed with this statement. agreed with this statement (54.2%) than disagreed with it (29.0%). Concerns about transmission of the virus to others and re-infection Over one quarter (38.2%) said that they agreed with the statement I were apparent in the responses to the next six items. Most have stopped having sex because of my HIV status. Similarly, 57.6% of respondents (66.2%) agreed with the statement I am afraid of participants agreed that HIV has negatively affected my libido. infecting my partner, or potential partner, with HIV, while very few Table 42 – Attitudes to HIV, sex and relationships Attitudes to HIV, sex and relationships I prefer to have a relationship with someone who also has HIV Few people would want a relationship with someone who has HIV I am afraid of telling potential partners of my HIV status in case they reject me Being HIV positive has helped me form more satisfying relationships I am afraid of infecting my partner, or potential partner, with HIV I feel more confident about unprotected sex because of the new treatments Medical treatments for HIV/AIDS make safe sex less important than it was Withdrawing before ejaculating (cumming) is a way to reduce the risk of passing on HIV Undetectable viral load means HIV is unlikely to be transmitted to a sexual partner even if I have sex without a condomI am concerned about becoming infected with another strain of HIV HIV has had a negative effect on my sexual pleasure If I know that my partner is HIV positive I find sex more pleasurable I stopped having sex because of my HIV status HIV has negatively affected my libido HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 tHE SOCIAl wORlD Of PlHIV Criminalisation of HIV transmission In the survey, we asked participants to what extent the current legal situation has had an impact on their decisions to disclose their status Recent high-profile cases of criminal prosecution for HIV transmission to sexual partners and their sexual practices to service providers. in Australia and internationally have changed the landscape within which HIV positive people assess their HIV status and make decisions Clearly legal issues are important to people, with 45.2% agreeing with about how and when to disclose their status. In this year's survey we the statement I am worried about disclosing my HIV status to sexual included questions to assess the impact of these developments on partners because of the current legal situation. the experiences of PLHIV.
There was less concern about the legal implications of disclosure of These cases and their ensuing media coverage, as well as an increase sexual practices to service providers, however 30.1% expressed some in the number of criminal prosecutions for transmitting HIV (Groves concern and 12.7% were uncertain. and Cameron, 2009), have intensified the discussion about the criminalisation of HIV transmission. A recently published NAPWA monograph explores these issues in depth (see NAPWA, 2009). 18.7% of those surveyed currently have children and 6.4% have Research has shown that dominant views about criminal prosecution dependent children. We were also interested in future plans for of HIV undermines HIV prevention efforts by placing expectation of children among PLHIV. Most PLHIV (73.4%) were not currently responsibility solely on the HIV positive sexual partner (Dodds, 2008) considering having children. and has the potential to reinforce stigma of HIV/AIDS (UNAIDS, 2008). Of the remainder, 21 PLHIV had decided to have children in the future In 2008, the Department of Health and Ageing produced the and 1 is attempting to have children. 42 were considering having a National Guidelines for the Management of People with HIV who child, but have not decided, and 21 people have considered having Place Others at Risk (Dodds, 2008), developed by the Blood a child, but have decided it is too risky. Three respondents were Borne Virus and Sexually Transmissible Infections Sub-Committee pregnant. While a greater proportion of women (heterosexual, bisexual (BBVSS) of the Australian Population Health Development Principal and lesbian) were considering, or had considered having children, Committee (APHDPC). some of those doing so are gay, bisexual or heterosexual men.
The Guidelines' stated aim is to inform and standardise approaches Table 44 – Planning to have children (number) in the various states and territories to the small number of people for whom coercive measures are needed. It acknowledges that an individual has the responsibility of protecting themselves and others from infection and that in most cases of potential transmission, prevention is best achieved through information, education, and the provision of resources. The Guidelines recommend that the roles of No, I already have clinician and public health official be kept distinct.
In an AFAO discussion paper, Groves and Cameron (2009) note that I have decided to the intersection of public health with criminal law is fraught, and the have a child/children authors highlight the need for discussion about the way in which in the future justice and health agencies can work together effectively. I am currently They recommend further research on the effects on affected trying to conceive/ communities and point out the need for developing ways to work get pregnant with journalists to ensure sensitive and accurate reporting of criminal I am currently prosecution. They also point to the need to address potential "fallout" issues such as re-establishing trust with doctors.
I have thought Table 43 – Attitudes toward legal issues about it but I haven't decided Attitudes to HIV, sex Strongly Disagree I have thought and relationships about it but I have I am worried about decided that it is disclosing my HIV status to sexual I don't have partners because enough information of the current legal to make a decision I am worried about disclosing my sexual practice to service providers because of the current legal situation HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 tHE SOCIAl wORlD Of PlHIV RECREAtIOnAl DRUG USE Practices In addition we asked people the amount of alcohol they consumed: of those who drank, 47.4% drank less than once per week, 28.5% Respondents were asked about their use of a range of non- drank weekly and 24.0% drank daily. Similarly, with marijuana, 36.8% prescription drugs, both those legally available and those that are smoked less than once a week, 14.7% weekly and 28.4% daily. currently prohibited in Australia. It must be noted that we only asked respondents if they had used Respondents were asked which of a list of substances they had used each of the other drugs in the previous twelve months, not how often in the last twelve months. For those drugs which are commonly they use them. Use of many drugs is occasional rather than regular injected, differentiation was made between injection and other and this may inflate the rates reported here. Gay male respondents means of administration. were significantly more likely than other groups to have used alcohol, Table 45 gives these results. As can be seen from these data, alcohol ecstasy, amyl and crystal-meth and less likely to have used heroin was the most commonly used drug followed by tobacco. Other drugs (injected) and prescribed methadone. that are popular in the gay and dance party scenes (amyl, ecstasy, non-injected speed and LSD) were also used by PLHIV. Table 45 – Recreational use of drugs (percentage of sample) Viagra or similar Speed (not injected) Cocaine (not injected) Steroids (injected) Heroin (injected) Methadone (prescribed) (Multiple responses possible) HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 Home, work and money Of those who were working, the mean number of hours worked was 37.8 per week (median=38.0). Those working full time worked We asked a series of questions about participants' accommodation an average of 43.5 hours per week (median=40.0) and those in status and experiences. These experiences vary considerably among part time employment worked an average of 22.6 hours/week PLHIV, most particularly as a function of whether individuals are in private or public accommodation. Table 47 – Employment status Current accommodation The current type of accommodation of the respondents can be seen in Table 46. Similar numbers of PLHIV were in accommodation that they own or rent through the private system. A smaller number of people were in public rental accommodation. These were more likely Not working/Retired /Home duties to be those on a government benefit. Table 46 – Current accommodation of respondents (percentage of total sample) Own or purchasing house or flat Impact of HIV on employment Private rental accommodation We asked respondents how their initial HIV diagnosis affected their Public rental accommodation(government owned) career plans. These data are shown in Table 48 below. A large proportion indicated that their career ended at their time of diagnosis (16.4%). Rent-free (e.g. provided by friends, family, etc.) Community housing/housing co-operative Table 48 – Impact of HIV diagnosis on career plans (percentage of sample) Households varied considerably. 41.2% of PLHIV lived by themselves, while the remainder lived with between 1 and 8 other adults My career plans did not change (median=1) and with between 1 and 4 children (for those living with children: mode=1 median=1). Around one third (31.9%) lived with a It was more difficult to plan for the future partner or spouse, and 5.7% lived with dependent children. In addition, My career ended/I stopped work 6.6% lived with other family members and 17.0% with a flatmate. A career was no longer as important 49.2% of PLHIV also lived with pets. The most common pets were I changed careers dogs and cats. Other companion animals included fish, birds, rabbits I was less likely to change careers and farm animals. 76.1% of respondents had access to a car. When asked how easy it was to access public transportation, 12.5% said it was very difficult, 13.3%, difficult, 36.1%, easy and 38.0%, very easy. Those currently in paid employment Respondents were asked about the level of stress in their current job. Two fifths rated the stress level as moderate (40.7%) while 29.4% said it was high and 9.0% said it was very high. Only 5.7% rated the stress The area of employment continues to present challenges to HIV level as very low and 15.2% said there was low stress (see Figure 8). positive people. Those in full-time work were somewhat more likely to report stress. While the need for financial security, social contact and a sense of worth are critical factors in HIV positive people's wishes to be in paid Figure 8 – Stress at work employment, the management of HIV disclosure, the intermittent effects of illness and the need for flexibility around taking time off can prove substantial barriers to obtaining and retaining employment. There are also considerable obstacles for those who have left employment in the past and are attempting to return to the workforce. These include de-skilling, explaining an extended absence for the workforce, issues of aging and changes in life goals. Employment status Just over half (58.2%) of the respondents were currently employed, with more being in full-time work (38.5%) than those in part-time work (19.7%). The remainder tended to describe themselves as either not working/home duties/retired (19.7%) or unemployed (10.6%). 11.9% said their work was HIV-related. HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 HOME, wORk AnD MOnEY Confidentiality in the workplace remains a critical and complex When asked about the impact that HIV had on their capacity to issue for positive people, particularly given ongoing experiences of perform their work duties, over half of the sample said that their discrimination. When asked what difficulties they experience around work was unaffected (see Table 50). One third said that they tired confidentiality at work, 16.1% said that they did not attempt to keep more quickly, and one fifth said that they had difficulty concentrating. their status confidential (see Table 49). Table 50 – Impact of HIV on work capacity (percentage of those in 63.6% said they have experienced no problem in this area. Of those who did experience difficulties, the greatest problem appeared to be gossip, followed by issues around explaining absences from work, and medication. When we examine the difficulties associated with confidentiality in terms It is not affected of whether the respondent works in an HIV related job, we find that those I tire more quickly in HIV related employment were less likely to wish to keep their status I have difficulty concentrating confidential and had fewer problems when they do chose to do so. I am less productive Table 49 – Difficulties with HIV status confidentiality in the I cannot always go to work workplace: percentages of total and specific samples I work reduced hours I do different duties (Multiple responses possible) I do not try to keep my HIV Living with HIV often involves intermittent periods of ill health, status confidential particularly around treatment changes and the need to access health and other services, often only available during work hours (Prestage et al. 2001). Respondents were asked how much flexibility their Explaining absences from work workplace gives them to take time off for reasons relating to HIV. Visible signs of illness Most PLHIV had the capacity to take time off for medical Difficulty keeping and taking appointments (see Table 51 below) and illness. There was less capacity to take time off for counselling and few had much capacity to take time off to engage in volunteer work. (Multiple responses possible) Table 51 – Capacity within workplace for HIV related interruptions When asked how many people in their workplace knew that they (percentage of those in paid employment) were HIV positive, 9.7% said that everyone knew, 7.8% said most Never Seldom Sometimes people knew, 17.6% said a few people knew, 14.6% said one person knew and 54.6% said no-one knew (see Figure 9).
Those working in a HIV related job were more likely to say everyone knew their HIV status than those in non- HIV related work (42.1% versus 2.5%) and similarly less likely to say no-one knew their HIV status (12.4% versus 61.0%). When you are sick Figure 9 – Disclosure in workplace HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 HOME, wORk AnD MOnEY Expenditure and debts The HIV Futures surveys have highlighted the financial difficulties Respondents were asked their weekly expenditure on a range of that many PLHIV contend with. These difficulties cannot be explained items. The results are shown in Table 53 below. The total mean simply by the proportion of PLHIV relying on government pensions expenditure on medication was $74 per week. Mean rental or or benefits. There are financial hardships associated with being HIV mortgage costs were $323. Food and utilities accounted for around positive. Some of these are structural and systemic, for example $130 and $77 respectively. 21.7% of respondents owned their own the costs associated with managing the negative consequences of home, while 22.2% were paying off their home. 25.0% received treatment, some result from stigma and disadvantage that result a rental subsidy averaging at $168.9per week (median= $70). from reduced employment options, while others are the cumulative Respondents were also asked their current debt burden as one effects of living for many years with uncertain or fluctuating health measure of the financial impact of HIV. This averaged at $33,000 with a median of $100. Table 53 – Weekly expenditure on medications and essentials ($AU) The source of income of the survey respondents is shown in Table 52 below. As with the previous HIV Futures survey, there were more people receiving a salary (47.1%) than on a government benefit Rent or mortgage repayments (38.1%), suggesting an encouraging trend.
Table 52 – Primary source of income: percentage of total sample Complementary therapies Antiretroviral drugs Assessments of benefits People receiving a pension may undergo an assessment by a Partner supports me Commonwealth Medical Officer. As there has been considerable community discussion about the impact of these assessments we Family/friends support me asked respondents about their experiences. A total of 26.6% (n=231) The median weekly in-hand income for respondents was $541 of those receiving a benefit in the previous two years had received and $662 excluding those reporting zero income. Figure 10 below such an assessment. gives the distribution of income in $125 intervals. The peak of the When asked what this experience resulted in, only 6.9% (n=16) said distribution corresponds to the income that one is likely to receive that their benefit was terminated (See Table 54 next page). 23.4% on a government pension. 23.5% of respondents had a partner with said that the assessment resulted in changes to their conditions of whom they share financial resources. The partners' median weekly benefit. Importantly the experience of assessment resulted in distress income was $800. for two fifths of the respondents while it clarified concerns for around one in ten. Figure 10 – Histogram of respondents'weekly income after tax HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 HOME, wORk AnD MOnEY Table 54 – Consequences of receiving an assessment of benefit Respondents who identified a salary as their primary source of from a Commonwealth Medical Officer income were significantly less likely to report an income below the (percentage of those assessed in last 2 years) poverty line. Over half of those on a government benefit were living in poverty (see Table 56). There was no gender difference in the proportions of people living below the poverty line. Require documentation from your doctor Table 56 – Poverty by income source Cause you distress Result in changes to the conditions of your benefits Result in an independent assessment Clarify concerns that you had Result in a shift from Pension to Newstart allowance Result in termination of your benefits Partner/ Family/friends/ Other (Multiple responses possible) χ 2 (3,1) = 175.372, p<0.001 There is also a clear relationship between poverty and self-rated As with the previous HIV Futures surveys, we have used the quarterly health and well being (see Table 57 and Table 58). Those living Henderson Poverty Lines published by the Melbourne Institute of below the poverty line were significantly more likely to rate these Applied Economics and Social Research to assess the extent of characteristics as poor or fair. poverty among PLHIV. The Henderson Poverty lines are set for specific income units. These units include the individual, any partner This pattern most likely represents an interaction between poverty with whom they share financial resources and any dependent and these factors, rather than a directional relationship. Worse health children. We used the Institute's data for the December 2011 quarter and well being limit access to employment and financial security, (Melbourne Institute of Applied Economic and Social Research, 2012), while poverty creates emotional distress, limits social interaction and the time at which the survey was completed. According to this measure over one quarter (28.6%) of PLHIV were Table 57 – Self-rated health of those above and below the poverty living below the poverty line. That this figure has remained so high line (percent within poverty group) across the ten years of the HIV Futures surveys suggests that current resources and strategies are inadequate and decisive action must be Self-rated health taken to address this pocket of severe social disadvantage. Correlates of poverty We look now at the differences between different groups in their likelihood to be living in poverty. Those in paid employment were significantly less likely to be classified as below the poverty line. Two fifths of those not in paid employment were living in poverty Table 58 – Self-rated well being of those above and below Table 55 – Poverty by employment status the poverty line (percent within poverty group) (percentage of employment categories) Self-rated health Employment status χ 2 (1,1) = 138.190, p<0.001 χ 2 (3,1) = 47.440, p<0.001 HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 HOME, wORk AnD MOnEY Costs As with previous surveys, we asked respondents about the difficulty When we examine the ratings of these items for those above and they had paying for a range of activities, goods and services. below the poverty line, those living in poverty were more likely to The results are shown in Table 59 below, with the not applicable rate all items as very difficult (see Table 60 on next page). responses excluded from the calculation for each item. Disturbingly, among those living below the poverty line, one The items that most respondents rated as very difficult to pay for quarter rated paying for medical services as very difficult, while the were quality of life costs like travel, going out, recreational drugs proportions that gave this response for co-payments for medication and entertainment. Those items most likely to be rated as not at all and costs of other prescribed medication are also very concerning. difficult were support services, medical services and medication. When it comes to the basics of life, substantial numbers of those Importantly substantial proportions rated food, clothing, utilities below the poverty line also rated these as very difficult.
and rent as very difficult. The experience of difficulty in meeting the costs of these items was rarely restricted to one area. That is, when individuals had difficulty paying for food, they also experienced difficulties with rent, utilities and quality of life items. Table 59 – Difficulty paying costs of items and services Difficulty paying costs Co-payments for medication for HIV/AIDS (n=724)3 Other prescribed medication (n=872) Medical services (doctor, dentist, etc.) (n=891) Complementary Therapies (n=614) Support services (counselling, etc.) (n=491) Entertainment (theatre, movies, concerts, etc.) (n=875) Going out (eating/drinking) (n=911) Sport (exerrcise, gym, etc.) (n=688) Recreational drugs (n=377) Travel/holidays (n=844) Rent/Mortgage/Housing costs (n=873) Transport (n=924) Child care (n=77) 3 Ns refer to the number of participants that identified this as an applicable cost. That is, those selecting 'not applicable' or giving no response are excluded from the percentages reported in that row.
HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 HOME, wORk AnD MOnEY Table 60 Difficulty paying costs of items and services by poverty status Difficulty paying costs Below poverty line Above poverty line Co-payments for medication for HIV/AIDS (n=193, 531)4Other prescribed medication (n=230, 641) Medical services (doctor, dentist, etc.) (n=227, 664)Complementary Therapies (n=150, 464) Support services (counselling, etc.) (n=127, 364) Entertainment (theatre, movies, concerts, etc.) (n=227, 648)Going out (eating/drinking) (n=230, 681) Sport (exercise, gym, etc.) (n=170, 518) Recreational drugs (n=107, 269) Travel/holidays (n=211, 633) Rent/Mortgage/Housing costs (n=219, 654) Utilities (telephone/electricity/gas/water) (n=254, 717)Food (n=262, 718) Clothing (n=248, 701) Transport (n=239, 686) Child care (n=14, 63) DISCRIMInAtIOnDiscrimination on the basis of HIV is unlawful in all jurisdictions in In addition the anticipation of discrimination may limit people's Australia. The introduction of anti-discrimination legislation has life choices in subtle but sustained ways. We have asked about the offered an avenue of redress for those with the energy and courage experience of discrimination in a range of settings. to pursue it, acts as a deterrent for employers, service providers and the like, and sends a clear message that such discrimination is unacceptable to the Australian population. 7.4% of respondents indicated that they had experienced less favourable However, PLHIV continue to experience less favourable treatment in treatment in relation to accommodation (2.8% in the last two years). many domains of their lives. While more detailed research is needed to adequately assess the specific impact of this treatment, we can reasonably imagine that the impact goes beyond the direct outcomes of the actions and is detrimental to both health and quality of life. 4 Ns refer to the number of participants below and above the poverty line respectively that identified this as an applicable cost. That is, those selecting 'not applicable' or giving no response are excluded from the percentages reported in that row.
HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 HOME, wORk AnD MOnEY 27.6% of respondents had experienced less-favourable treatment at a 38.7 % of respondents currently had private health insurance and 15.6 medical service as a result of having HIV. This comprised 13.0% of all % currently had some other form of income or mortgage insurance. respondents that had experienced such discrimination in the last two 23.4 % of respondents indicated that they had experienced less years and 14.6% that experienced this more than 2 years ago.
favourable treatment in relation to insurance. The most commonly When asked what form this discrimination took, the most common reported example of less favourable treatment was being unable to responses were avoidance (43.5%) confidentiality problems (38.7%) take out an insurance policy, for example health insurance and travel and increased infection control (39.1%). These experiences are shown in Table 61. Table 61 – Form of HIV-related discrimination experienced at medical Workplace service (percentage of those experiencing discrimination) 15.4% of respondents had experienced less-favourable treatment in the workplace as a result of having HIV. This comprised 4.8% of all respondents that had experienced such discrimination in the last two years and 10.6% that experienced this more than 2 years ago. When asked what form this discrimination took the comments ranged from unfair dismissal to reduced advancement opportunities to bullying. Confidentiality problems Increased infection control Refusal of treatment (Multiple responses possible) HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 MEtHODS AnD InStRUMEnt Completed paper surveys were returned in a reply-paid envelope to La Trobe University. Respondents were also able to add their This section describes the research design, method of recruitment, contact details to the program mailing list to receive reports and to development of the survey instrument, sampling issues and data participate in further research by completing an additional form and sending it in a separate envelope. The survey instrument On-line surveys were able to be saved and re-opened by respondents so that they could be completed in their own time. Completed HIV Futures is an anonymous, cross-sectional survey of a sample of surveys were submitted online and stored by demographix.co.uk. people living with HV/AIDS in Australia. The HIV Futures 7 survey ran Respondents completing the survey online were also able to provide from October 2011 through April 2012. The survey was available as researchers with their contact details by filling in and submitting a both a self-complete mail back survey and on-line. This is the second separate form, which was stored in a database separate from the time that HIV Futures has been made available on-line, reflecting the growing use of the internet amongst Australian households. On-line surveys have been used successfully to collect health RECRUItMEnt AnD SAMPlInG information from GLBTI Australians and same sex attracted young people in Australia (Hillier et al., 2005, Pitts et al., 2006). We hoped There is no register of HIV positive Australians, as HIV testing is that by offering HIV Futures online we would provide an easier way voluntary and anonymous. As the survey was anonymous and as for the usual demographic of respondents to complete the survey multiple recruitment strategies were employed a simple response and also allow us to access harder to reach PLHIV, such as those rate cannot be calculated. Recruitment took place using a set of living in rural or regional areas, or those not in contact with HIV/ methods in order to reach a diverse population of HIV positive AIDS services. The on-line survey was accessed through the website www.HIVfutures.org.au. The site was hosted by Demographix.co.uk, This approach meant that some participants received multiple copies an experienced commercial provider of web-based surveys with of the survey from different sources. Recruitment was also combined excellent attention to issues of security and privacy. with a promotion strategy that increased community awareness of the research and its utility. The inside front cover of the paper survey also contained the link to the online survey so that each participant The instrument was based in large part on the HIV Futures 6 survey receiving a paper copy was also informed about the availability of (Grierson et al., 2009), which in turn was adapted from the five the on-line survey. previous surveys (Ezzy et al., 1998, Grierson et al., 2000, Grierson 1. Direct distribution et al., 2004a, Grierson 2006). The survey content was developed in consultation with a number of organisations and individuals from the One copy of the survey was mailed directly to individuals who HIV/AIDS sector (see Consultations section below). Most items were participated in HIV Futures 5 and expressed interest in participating retained in their original format to allow comparisons between the six in future research conducted by the Living with HIV program at studies. ARCSHS. Potential participants were able to request a copy of the New questions and options were added to reflect changes in the survey by telephoning the free call number, emailing the researchers. context in which people live with HIV/AIDS in Australia, including policy and service changes over the past three years. Questions 2. Promotion and marketing were also edited, and some removed, to make the survey easier to Paid Advertising The survey was advertised in a number of gay newspapers with The survey consisted of 170 items organised into eight sections: distribution around the country. Banner ads with a direct link to the demographics; accommodation; health and treatments; services on-line survey were placed on: gaydar.com.au.
and communities; sex and relationships; employment; recreational drug use; and finances. Each section included an explanation of the Advertising through community organisations purpose of the items. Most items in the survey were closed-coded The survey was promoted extensively through community with either single or multiple response options. organisations. Advertisements, articles and news items were placed ‘Other' categories were included for most items to ensure that in community newsletters, banner ads were placed on community significant experiences of living with HIV were not excluded. There websites and promotional postcards and reception cards were placed was a number of attitude/ belief items scored using a four- and five- at reception desks.
point Likert scales. There were also write-in and open-ended items. The online survey used identical wording to the paper survey 3. Community sites and contained exactly the same items, however the online survey In addition to advertising the survey, community organisations were provided users with pull-down menus for some items, such as involved in promoting the study by mailing the survey to members numbers, years and months. These were included in order to ensure accompanied by a covering letter from the organisation explaining relatively clean data. The online survey also had a number of skips the purpose of the study, explaining the value of the research, and built into it so that respondents did not have to see items that were encouraging participation. not relevant to them, for example, respondents who were not taking antiretroviral treatments did not have to see the questions about these treatments. HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 The survey forms were made available on-site at numerous Thirdly the survey is self-complete. This means that PLHIV can community organisations around the country. These organisations complete the survey in a setting that is comfortable and safe for also distributed copies of the survey to sites and venues they felt them and in their own time. Feedback from participants during were appropriate and with whom they have ongoing relationships. this study indicated that some people completed the survey over Staff at some organisations also assisted people to complete surveys. a number of days or weeks, and that individuals consulted their The survey was also promoted at staff and volunteer meetings. medical practitioners and other records to verify some of the details included in the survey. 4. Clinical sites Fourth, the population of HIV positive Australians is constantly a. General Practitioners evolving. A cross-sectional survey allows us to include newly HIV positive individuals as well as those who have been positive for some Copies of the survey, postcards and reception cards were mailed time. These groups may have an overall similar experience of living directly to clinical practices that see a significant number of HIV with HIV, but the differences between them can be profound. positive clients. This included, but was not limited to, the S100 prescribers. The survey the web link was also promoted by ASHM There are also certain limitations associated with the recruitment (Australasian Society for HIV Medicine) to its members and email method used.
Caution must therefore be exercised in the application of the findings of this research to individuals who are less likely to be included in the b. Hospital settings sample, such as people with limited literacy, people of non-English Where ethical approval was obtained, the survey was available in speaking background, and those who are particularly geographically the waiting areas of a number of HIV and Infectious Disease clinics or socially isolated. We have taken a range of measures to address or distributed directly to clients by staff. Surveys were also available through social workers in some hospitals. For example, participants were offered the option of completing the c. Other clinical sites survey over the telephone either directly with the researchers using a free call number, or with service providers. In addition, the Telephone Surveys were also distributed through sexual health centres and Interpreter Service (TIS) was promoted as a way of completing the community health centres including those with a specific HIV focus. survey for non-English speakers, either by telephone or in person. Generally these were available in waiting rooms, although some distributed them directly to clients.
Surveys were also completed with the assistance of service providers or community agency workers for those with literacy problems or JUStIfICAtIOn Of StUDY MEtHODOlOGY those with physical impairment. The combination of clinical and community setting for study recruitment was intended to optimise HIV Futures is a cross-sectional study of a sample of HIV positive access to the study. This means that people are not disadvantaged Australian residents. A cross-sectional study is one in which a new from entering the study if they are not currently using anti-retroviral sample is collected on each occasion. While a proportion of the therapies or not currently in contact with one of the main HIV sample may have completed the previous surveys, the responses treatment providers. for each survey are not formally linked, so that direct comparison Nevertheless it must be acknowledged that this methodology will between individuals' responses over time is not possible. The cross- never be appropriate for some members of the PLHIV community. sectional methodology was chosen for the following reasons. This is particularly so for those from culturally and linguistically The HIV Futures surveys are anonymous. HIV/AIDS remains a diverse backgrounds who may be marginalised even within their sensitive issue for many PLHIV in Australia. Our previous research own communities, and those for whom invisibility is the key to their and that of our colleagues tell us that PLHIV still experience stigma continuing safety. and discrimination.
Community development methodologies are currently being Allowing the survey to be completed anonymously helps to allay explored in order to establish how the very real needs of these PLHIV's concerns that information about their HIV status and the people can be understood and documented over time within an other issues addressed in the survey may be compromised. action research framework which offers support and strengthens networks as the research proceeds. Secondly, the survey is national. It would not be possible to achieve this with a cohort design, since the relative ratios of states and It cannot be stressed strongly enough that no piece of research territories require adjustment for each survey. The distribution of should be used in isolation. Each study gives a different perspective the survey also relies on diffusion through community groups in a on the HIV epidemic, and collectively they lead to a greater manner that maintains the anonymity of respondents, particularly understanding of the dynamics of the epidemic and the issues those in regional areas. affecting Australian PLHIV. HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 Consultation around the HIV Futures Study was undertaken Statistical comparisons including ANOVA and chi-square have been employed in the analysis of the data, although for clarity the details 1. We engage directly with representatives of our three partner of these are not included in this report. All significant differences organisations: The National Association of People With HIV Australia reported have a probability of at most α = 0.01. (NAPWHA), The Australian Federation of AIDS Organisations (AFAO) and The Australasian Society for HIV Medicine (ASHM). fURtHER AnAlYSIS These organisations co-ordinate the involvement of their member organisations around the country and provide consolidated advice and guidance for this project As with the previous HIV Futures surveys, a number of reports and 2. Consultations were conducted with State and national bodies specific issues papers analysing specific populations and specific in person and by mail prior to the finalisation of the research issues will be produced over the coming years.
instrument. This included feedback on the survey content and on recruitment strategies. 3. Consultation was also undertaken with key individuals around the country including clinicians, treatments officers, mental health workers and service providers. Particular consultation was undertaken with hepatitis C organisations and clinicians to ensure that the expanded hepatitis C section of the survey was appropriate and useful. wEIGHtInG In order to ensure that the results reported in this document accurately represent the Australian population of PLHIV, comparisons were made to the Australian HIV Surveillance Report (Kirby Institute 2012) and the data were weighted to conform to the demographic profile of the Surveillance Report. A weighting algorithm based on mode of infection, gender, state of residence and diagnosis of AIDS defining illness has been applied to all the analyses that follow. Consequently, findings are presented in terms of sample percentages rather than frequencies. Sample sizes (Ns) are given when the table represents a subset of the total sample. These Ns are weighted.
HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 Allen, K., Guy, R., Leslie, D., Goller, J., Chen, L. F., Hoy, J. & Lewin, S. R. (2007) Grierson, J., Bartos, M., de Visser, R. & Medland, N., Roth, N., Lewis, J. & Hellard, Ten Years of Highly Active Antiretroviral McDonald, K. (2000) HIV Futures II. M. (2008) The Rise of Infectious Syphilis Therapy for HIV Infection. Medical Journal The Health and Well-Being of People in Victoria and the Impact of Enhanced of Australia, 186(3), 146-151.
with HIV/AIDS in Australia, Melbourne, Clinical Testing.
Cohen, J. (2009) HIV/Aids Research. The Australian Research Centre in Sex, Australasian Chapter of Sexual Health Surprising Aids Vaccine Success Praised Health and Society, Latrobe University, Medicine (2008) Sexually Transmitted and Pondered. Science, 326(5949), 26-7.
Infections Testing Guidelines for Men Department of Health and Ageing (2004) Grierson, J., Thorpe, R. & Pitts, M. (2006) Who Have Sex with Men.
Australian National Notifiable Diseases HIV Futures Five: Life as We Know It, Australasian Society for HIV Medicine (2004) Case Definitions (Accessed 23/09/09) [Bundoora, Vic.], Australian Research HIV Management in Australasia: A Guide Centre in Sex, Health and Society, for Clinical Care. IN Hoy, J. & Lewin, S. (Eds.) Sydney, NSW.
Grierson, J Thorpe, R Saunders M and Pitts Australasian Society for HIV Medicine (2006) Department of Health and Ageing (2006) M (2004) HIV Futures 4: state of the Coinfection: HIV & Viral Hepatitis: A Guide National HIV Testing Policy 2006. [positive] nation, monograph series for Clinical Management. IN Gregory Dore Canberra, Department of Health and number 48, The Australian Research & Joe Sasadeusz (Eds.) Sydney, NSW, Ageing, Commonwealth of Australia Centre in Sex, Health and Society, Latrobe Australasian Society for HIV Medicine.
University, Melbourne, Australia Dodds, C. (2008) Homosexually Active Australian Bureau of Statistics (2012) Men's Views on Criminal Prosecutions Grierson, J. G., Misson, S. A. & Pitts, M. K. Year Book Australia 2011. Canberra, for HIV Transmission Are Related to (2004b) Correlates of Antiretroviral Commonwealth of Australia.
HIV Prevention Need. AIDS Care- Treatment Breaks. HIV Medicine, 5(1), 34-39.
Australian Bureau of Statistics (2009) Psychological and Socio-Medical Aspects National Health Survey 07-08. Canberra, of AIDS/HIV, 20(5), 509 - 514.
Groves, A. & Cameron, S. (2009) Criminal Commonwealth of Australia.
Ezzy, D., de Visser, R., Bartos, M., Mc Prosecution of HIV Transmission: The Policy Agenda. AFAO Discussion Paper. Behrens, G. M., Stoll, M. & Schmidt, R. E. Donald, K., O'Donnell, D. & Rosenthal, D. Sydney, AFAO.
(2000) Lipodystrophy Syndrome in HIV (1998) HIV Futures Community Report: Infection: What Is It, What Causes It and [Health, Relationships, Community, and Hillier, L., Mitchell, A. & Turner, A. (2005) How Can It Be Managed? Drug Safety, Employment], [Carlton South, Vic.], Writing Themselves in Again : 6 Years 23(1), 57-76.
National Centre In HIV Social Research On : The 2nd National Report on the : People Living with HIV/AIDS and Their Sexuality, Health & Well-Being of Same- Beusterien, K. M., Davis, E. A., Flood, Sex Attracted Young People, Melbourne, R., Howard, K. & Jordan, J. (2008) Australian Research Centre in Sex, Health HIV Patient Insight on Adhering to Fleming, D. T. & Wasserheit, J. N. (1999) From and Society.
Medication: A Qualitative Analysis. AIDS Epidemiological Synergy to Public Health Care-Psychological and Socio-Medical Policy and Practice: The Contribution Jin, F., Prestage, G. P., Zablotska, I., Aspects of AIDS/HIV, 20(2), 251-259.
of Other Sexually Transmitted Diseases Rawstorne, P., Kippax, S. C., Donovan, to Sexual Transmission of HIV Infection. B., Cunningham, P. H., Templeton, D. J., Carr, A., Samaras, K., Thorisdottir, A., Sexually Transmitted Infections, 75(1), 3.
Kaldor, J. M. & Grulich, A. E. (2007) High Kaufmann, G. R., Chisholm, D. J. & Cooper, Rates of Sexually Transmitted Infections D. A. (1999) Diagnosis, Prediction, Grierson, J Power, J Pitts, M Croy, S Clement, in HIV Positive Homosexual Men: Data and Natural Course of HIV-1 Protease- T Thorpe R and McDonald K (2009) from Two Community Based Cohorts. Inhibitor-Associated Lipodystrophy, HIV Futures 6: Making Positive Lives Sexually Transmitted Infections, 83(5), Hyperlipidaemia, and Diabetes Mellitus: Count, monograph series number 74, A Cohort Study.[See Comment]. Lancet, The Australian Research Centre in Sex, 353(9170), 2093-9.
Health and Society, Latrobe University, Karp, G., Schlaeffer, F., Jotkowitz, A. & Melbourne, Australia Riesenberg, K. (2009) Syphilis and HIV Co-Infection. European Journal of Internal Medicine, 20(1), 9-13.
HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 Lenert, L. A., Feddersen, M., Sturley, A. Palacios, R., Jimenez-Onate, F., Aguilar, M., & Lee, D. (2002) Adverse Effects of Galindo, M. J., Rivas, P., Ocampo, A., Medications and Trade-Offs between Berenguer, J., Arranz, J. A., Rios, M. J., Length of Life and Quality of Life in Knobel, H., Moreno, F., Ena, J. & Santos, J. Human Immunodeficiency Virus Infection. (2007) Impact of Syphilis Infection on Hiv American Journal of Medicine, 113(3), Viral Load and Cd4 Cell Counts in HIV- Infected Patients. Journal of Acquired Mannheimer, S., Friedland, G., Matts, J., Child, Immune Deficiency Syndromes: JAIDS, C. & Chesney, M. (2002) The Consistency 44(3), 356-9.
of Adherence to Antiretroviral Therapy Persson, A. (2004) Incorporating Predicts Biologic Outcomes for Human Pharmakon: HIV, Medicine, and Body Immunodeficiency Virus-Infected Persons Shape Change.
in Clinical Trials. Clinical Infectious Pitts, M., Smith, A., Mitchell, A. & Patel, Diseases, 34(8), 1115-1121.
S. (2006) Private Lives : A Report on Mao, L., Kidd, M. R., Rogers, G., Andrews, the Health and Wellbeing of GLBTI G., Newman, C. E., Booth, A., Saltman, D. Australians, Melbourne, Australian C. & Kippax, S. C. (2009) Social Factors Research Centre in Sex, Health and Associated with Major Depressive Society, La Trobe University.
Disorder in Homosexually Active, Gay Rajagopalan, R., Laitinen, D. & Dietz, B. Men Attending General Practices in Urban (2008) Impact of Lipoatrophy on Australia. Australian & New Zealand Quality of Life in HIV Patients Receiving Journal of Public Health, 33(1), 83-6.
Anti-Retroviral Therapy. AIDS Care- Melbourne Institute of Applied Economic Psychological and Socio-Medical Aspects and Social Research (2012) Poverty of Aids/Hiv, 20(10), 1197-1201.
Lines Australia: December Quarter 2011. UNAIDS (2008) Policy Brief: Criminalization Melbourne, University of Melbourne.
of HIV Transmission (Accessed 14 Oct NAPWA (2009) The Criminalisation of HIV Transmission in Australia: Legality, Morality and Reality. IN Cameron, S. & Rule, J. (Eds.) NAPWA Monograph. Sydney, NAPWA.
Kirby Institute (2012) HIV/AIDS, Viral Hepatitis and Sexually Transmissible Infections in Australia: Annual Surveillance Report 2012. Sydney, NSW, Kirby Institute, University of New South Wales.
NCHSR (2008) HIV/AIDS, Hepatitis and Sexually Transmissible Infections in Australia: Annual Report of Trends in Behaviour 2008. IN Imrie, J. & Frankland, A. (Eds.), National Centre in HIV Social Research, The University of New South Wales: Sydney, 2008.
HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 List of tables and figures TABLESTable 1 – State or Territory Table 17 – Viral loads of those taking Table 29 – Most important sources of respondents' residence and not taking antiretroviral therapy of information about treatments Table 2 – Years of respondent's testing (percentage within rows) and living with HIV (percentage positive and presumed infection (%) Table 18 – CD4 of those taking and Table 3 – Educational level not taking antiretroviral therapy Table 30 – Issues where participants (percentage within rows) lack information (percent of total sample) 14 Table 4 – Reasons for testing Table 19 – Reasons for stopping ARV among those who have stopped Table 31 – Other HIV positive persons Table 5 – Respondents' self ratings known by respondent of general health status Table 20 – Attitudes to antiretroviral Table 32 – People the respondent has Table 6 – Respondents' self ratings drugs: percentage of total sample disclosed their HIV status to of general wel -being Table 21 – Lifestyle reasons for taking Table 33 – Sources of unwanted disclosure Table 7 – Results of most recent breaks (percent of those taking breaks (percentage of those experiencing serological tests (percentage of and percentage of those taking a unwanted disclosure) break in the previous 2 years) Table 34 – Importance of personal Table 8 – Health conditions Table 22 – Clinical reasons for taking characteristics to respondents' sense of experienced in the past 12 months breaks (percent of those taking Table 9 – Attitudes around body image 4 breaks and percentage of those Table 35 – Social support received taking a break in the Table 10 – Participants diagnosed with from different sources: percent previous 2 years) a sexual y transmitted infection in past who gave valid responses for each Table 23 – Effect of break on health and wel being (percentage of those Table 11 – Respondents' reported Table 36 – Attitudes to HIV status taking break and percentage in mode of hepatitis C infection Table 37 – Type of sexual (percentage of those with hepatitis C) relationship(s) by gender Table 24 – Effect of break on viral Table 12 – Attitudes to health management and sexuality of respondent load and CD4 (percentage of those (percentage of total sample) Table 13 – Use of complementary Table 38 – Condom use in Table 25 – Number of times participants therapies in the past six months penetrative sex with regular partner take medications (for those taking (percentage of total sample) by respondent and partner gender class of medication) Table 14 – Antiretroviral drugs used Table 39 – Condom use with regular Table 26 – Physician used for general by respondents: percentage of those partner by respondents' gender, and HIV related treatment: percentage currently using ARV partners' gender, and partners' Table 15 – Difficulties of taking ARV Table 27 – Percent of respondents among those currently using ARV Table 40 – Condom use with casual who use services through HIV/AIDS (percentage of those on ARV) partner by respondent and partner Table 16 – Attitudes to medication: Table 28 – Sources of information percentage of those currently Table 41 – Condom use with male about treatments and living with HIV casual partner by partners' (percentage of sample) HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 Table 42 – Attitudes to HIV, sex Table 56 – Poverty by income source Figure 1 – Multiple hepatitides and relationships Table 57 – Self-rated health of those (percentage of respondents) Table 43 – Attitudes toward above and below the poverty line Figure 2 – Use of Antiretroviral (percent within poverty group) Table 44 – Planning to have Table 58 – Self-rated well being of those Figure 3 – Effect of commencing children (number) above and below the poverty line antiretroviral medication on health Table 45 – Recreational use (percent within poverty group) and wel being (percentage of of drugs (percentage of sample) Table 59 – Difficulty paying costs those taking ARV) Table 46 – Current accommodation of items and services Figure 4 – Respondents' response of respondents (percentage of total Table 60 – Difficulty paying costs of to the statement Antiretroviral items and services by poverty status drugs mean better prospects for most people Table 47 – Employment status Table 61 – Form of HIV-related Figure 5 – Time spent with other Table 48 – Impact of HIV diagnosis discrimination experienced at on career plans (percentage medical service (percentage of those experiencing discrimination Figure 6 – Time frame for future planning Table 49 – Difficulties with HIV status confidentiality in the Figure 7 – Sexual practice with workplace: percentages of total the most recent casual partner and specific samples Figure 8 – Stress at work Table 50 – Impact of HIV on work Figure 9 – Disclosure in workplace capacity (percentage of those Figure 10 – Histogram of respondents' in paid employment) weekly income after tax Table 51 – Capacity within workplace for HIV related interruptions (percentage of those in paid employment) 25Table 52 – Primary source of income: percentage of total sample Table 53 – Weekly expenditure on medications and essentials ($AU) Table 54 – Consequences of receiving an assessment of benefit from a Commonwealth Medical Officer (percentage of those assessed in last 2 years) Table 55 – Poverty by employment status (percentage of employment categories) 26 HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 vi , 23, 28, 30 Employment vi , 14, 23, 24, 25, 26, 30 Indigenous Australians AIDS Defining Il ness AIDS organisations Injecting drug use 10, 11, 12, 25, 30 vi, 13, 14, 16, 23, 25,26 See also Children vi, 12, 13, 14, 15, 16, 23, 25,26 v, vi, 1, 2, 16, 17, 18, 26, 32 14, 15, 16, 21, 23, 26 Complementary therapies 11, 12, 13, 14, 15, 21, 24, 25, 26, 28, 29, 30, 32 Other health conditions v, 3, 5, 8, 9, 12 Criminalisation 21 other conditions v, 3, 5, 8, 9, 12 vi, 15, 21, 23, 24 vi, ix, 16, 17, 23 HIV-related il nesses vi , 2, 20, 24, 28, 29, 31 vi, 5, 14, 16, 22, 30 Pre and post test counsel ing / discussion 2Prescriptions 12Publications HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 vi, 15, 17, 18, Testing v, 1, 2, 5, 9, 30 v, vi , 8, 10, 23, 27, 28 sero-concordant 18 sero-nonconcordant 18 5, 8, 9, 10, 11, 12, 13, 14, 20, 24, 25, 28, 29, 30, 31, 32 S100 prescribers v, vi, 3, 9, 12, 17, 20 vi, 5, 12, 13, 14 23, 24, 25, 29, 31, 32 See also Employment vi, 2, 13, 15, 16, disclaimer
The information contained in this brochure is indicative only. While every effort is made to provide full and accurate information at the time of publication, the University does not give any warranties in relation to the accuracy and completeness of the contents. The University does not accept responsibility for any loss or damage occasioned by use of the information contained in this publication. La Trobe University is a registered provider under the Commonwealth Register of Institutions and Courses for Overseas Students (CRICOS). CRICOS provider: 00115M HIV Futures Seven – The Health and Wel being of HIV Positive People in Australia, ARCSHS 2013 COntACtAustralian Research Centre in Sex Health and Society General enquiries T +61 3 9479 8700 F +61 3 9478 8711 E [email protected] latrobe.edu.au/arcshs CRICOS Provider 00115M

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