The epidemiological picture of HIV infection in indigenous populations in Australia is still unfolding. Aboriginal and Torres Strait Islander peoples (hereafter ‘Aboriginal people’) make up 2.4% of the total population, of which 14% reside in Western Australia . National surveillance has observed similar patterns of HIV diagnoses in both Aboriginal and non-Aboriginal people , although there is now some evidence that, in Western Australia at least, new HIV infections are occurring at a higher rate for Aboriginal people .
There are different patterns of HIV infection in Aboriginal people, with nearly equal numbers of new HIV diagnoses attributed to heterosexual and male homosexual contact, compared with the 77% of newly diagnosed infections in non-Aboriginal diagnoses attributed to male homosexual contact . There are also higher rates of HIV in Aboriginal women, with 33% of new cases nationally diagnosed in women, compared with 10.8% of non-Aboriginal cases . In Western Australia, the rates of new HIV diagnoses in Aboriginal women are 18 times those for non-Aboriginal women .
A troubling indicator of the differential impact of HIV among Aboriginal people is the rates of AIDS diagnoses, which have increased from 1.5 per 100 000 people in 2000 to 3.5 in 2004, compared with 0.8 in non-Aboriginal people in 2004 . Factors that may be responsible for these higher rates include late presentation, co-morbidities with other chronic illnesses, and reluctance or difficulty in accessing health services. As antiretroviral therapy (ART) is effective in reducing rates of progression to AIDS , treatment uptake is another important factor to examine.
Before the current study, HIV Futures II was the only study that had investigated the experience of living with HIV for Aboriginal people . In that national survey, 23 respondents identified as Aboriginal and Torres Strait Islander peoples providing a unique, if limited, picture of their experiences, including access to and uptake of ART. However, only one of those respondents was from Western Australia. Furthermore, the nature of the survey did not allow for an in-depth examination of the cultural and contextual aspects of treatment uptake. This paper represents the first such study of the barriers and incentives to HIV treatment uptake in Aboriginal people in Western Australia.
It is vital to acknowledge that the indigenous populations of Australia continue to live with social, economic and health consequences of colonization and the subsequent government policies of dispossession, cultural genocide, and the removal of children from Aboriginal families [7,8]. The continuing and pervasive marginalization of Aboriginal people is embodied in social discrimination, unemployment, poverty and lack of education, and contributes to high rates of alcohol and other substance abuse, domestic violence, crime and incarceration [8,9]. The health status of Aboriginal people is markedly poorer than for non-Aboriginal Australians, particularly in terms of life expectancy, infant and child health, and chronic disease . Aboriginal people have poorer access to adequate housing, drinking water, sanitation and nutrition, and fewer opportunities to access primary healthcare . This picture of the cultural context of Aboriginal people's lives provides some of the background to the issue of treatment uptake among Aboriginal people who are HIV-positive.
This project was developed and conducted in partnership with Aboriginal people who are HIV-positive as well as the Aboriginal health providers who care for them . Participants were recruited through referral from a range of health providers, including metropolitan and rural health services and the Western Australian AIDS Council. Although referrals were slow, with the invaluable assistance of local health workers, 20 people were interviewed between February and September 2003, representing almost half the total number of Aboriginal people known to be living with HIV in Western Australia at the end of 2002 (C.M. Giele, unpublished data. Perth, Western Australia: Epidemiology and Surveillance Program, Department of Health; 2003). Participants chose the interview locations, including the researcher's office, rural health clinics, private homes, hostels and one prison setting. The interviews examined such issues as diagnosis, disclosure, discrimination, access to services and the social and economic impact of HIV. This paper is focused on the issue of treatment uptake.
The 20 participants included 16 women and four men, aged 22–54 years. Two of the men said they had acquired HIV through male homosexual contact, and the rest of the participants through heterosexual contact. There was no evidence of non-sexual transmission of HIV, although rates of injecting drug use transmission are higher in Aboriginal people than non-Aboriginal people (8.0 versus 5.1%) in Western Australia . Four participants lived in metropolitan areas, that is, their usual address at the time of interview was a suburb of Perth or Fremantle. The rest lived in rural towns ranging from a few thousand to less than a hundred people. Some of these towns are considered remote because they are more than 500 km from populated localities and service centres. Table 1 summarizes participants' treatment histories.
Approximately half the participants (55%) were on ART at the time of interview. This compares with 62.4% of respondents to the 2004 Positive Health longitudinal cohort study, which has shown a significant decline in the proportion of people on combination therapy in the past few years . Although the sample size of the current study is quite small, the higher rates of progression to AIDS in Aboriginal people  may nevertheless raise concerns about this lower rate of treatment uptake. Of the nine participants not on treatment, the two men had never been prescribed ART, whereas the seven women had all been prescribed ART at some point, but had ceased by the time of the interview. As no clinical data were collected, it is not known whether or not all participants should have been considered medically suitable for ART. However, early intervention had been the dominant treatment philosophy in Western Australia and elsewhere in the period leading up to the study , so it is appropriate to examine the barriers and incentives that may shape treatment uptake among Aboriginal people.
Fear of disclosure and discrimination as a result of the shame associated with HIV were major barriers to treatment uptake. Five participants reported unwanted disclosure by family members, former partners or friends, and two believed unwanted disclosure had occurred through attending health services. Thirteen had practical experience of discrimination, describing other people's reluctance to share eating and drinking utensils with them and being insulted or called derogatory names relating to their HIV status. A lack of privacy and difficulty in keeping secrets within their family and community were also reported. Several participants who were on ART hid their medications because they did not want others to guess their HIV status. One participant had begun carrying her treatments in a handbag, because she received unwanted attention when carrying them in a paper bag. However, as she had not previously used a handbag, she was still fearful of disclosure.
The second major barrier was alcohol consumption. Alcohol featured in the accounts of many participants, as a key element of the risk context in which they acquired HIV, and as a perceived factor in the progression of infection. Some had stopped drinking, but those who continued reported difficulties in maintaining treatment regimens. One participant, a mother in her early thirties living in rural Western Australia, stopped taking medication while drinking, and then took extra doses to ‘catch up’: “If you've had a hard night out it stops you. But you know, you make it up until … You don't double your dose but you take your one dose again … until you start catching up.”
Although participants expressed a willingness to comply with treatment regimens, the requirements for adherence are such that they are almost inevitably compromised by heavy regular alcohol consumption. Although not explored in this study, medical practitioners may also be reluctant to prescribe ART to Aboriginal people known to be heavy drinkers, because of a perception that a drinking problem decreases adherence .
A potential barrier that did not emerge in this study is the financial cost of HIV treatments, probably because of participants' access to services and ART that is free at the point of delivery. However, adhering to rigorous and long-term ART regimens requires adequate income, stable accommodation and a capacity to afford nutritious food and other items for a healthy home. All 20 participants were on very limited incomes, which is unfortunately the norm for many Aboriginal people .
Pregnancy emerged as a major incentive to treatment uptake in the women taking part in this study. Nine of the 16 female participants had had 12 live births since diagnosis, with two giving birth to more than one child. All the women were prescribed ART during pregnancy, as were their babies for the first 6 weeks of life. None of the babies acquired HIV. Treatment uptake during pregnancy was especially assisted by one health service in a regional area of ‘special need’, which had developed expertise in managing the health of Aboriginal people who are HIV-positive. Although this service was effective in increasing treatment uptake in the Aboriginal women residing in the area, most did not continue with ART after their children were born. This does not necessarily mean they were averse to continuing. For example, one participant, a young mother living in a rural area, who had been diagnosed with HIV at the age of 16 years, expressed a desire for treatments that might allow her to breastfeed: “The only thing I can't understand, how could it (HIV) get to the baby through the breast milk, kind of thing? If they had one small special tablet maybe it would have been alright.”
Most of the women stopped ART after pregnancy either because they had low viral loads and high measures of immune function that did not necessitate continuation or they had felt frustrated by difficult treatment regimens.
Participants spoke highly of health services that provided holistic care, i.e. services that recognize the many factors impacting their lives in addition to their HIV infection. In particular, those participants living in the regional area of special need were supportive of the model of service delivery undertaken there. This holistic model was inclusive of the diverse needs of Aboriginal people who are HIV-positive, providing psychosocial and welfare support alongside ongoing health and medical care. ART was described as more manageable in the context of this broad-based model of care and support. For example, a female participant aged in her late twenties and living in a rural area declared: “People got someplace to go now … this place doin’ okay around here. They up to date with people and medications. See how they goin' with their lives and that.”
HIV Futures 4 identified some of the barriers to treatment uptake for Australians living with HIV as side effects, organizing meals around medication, carrying medication and taking medication in public . Positive Health reported the most common reasons for ceasing or changing ART regimens as side effects, concerns about long-term effects, and feeling ‘fed up’ with the regimen . Whereas the accounts that emerged from these interviews confirm these as barriers to treatment uptake among Aboriginal people in Western Australia, they also point to some different issues. In particular, this study suggests that the social and cultural values of Aboriginal people may facilitate treatment uptake in some contexts, and discourage it in others.
The fear of unwanted disclosure and discrimination is linked to shame . If an individual feels shame about being infected with HIV, they may avoid taking up treatments that could bring attention to the self or shame to family and community. Social participation is another value highly respected in Aboriginal communities. An individual who does not take part in social occasions such as drinking sessions may feel left out or even face social derision . Prescribing regimens are not conducive to heavy alcohol consumption, and so this longstanding and enjoyed form of social participation can form a barrier to treatment uptake. This may be exacerbated by the potential for medical practitioners to be reluctant to prescribe ART to Aboriginal people who are heavy drinkers, are homeless or have otherwise unpredictable or erratic lives.
Other social and cultural values may facilitate treatment uptake in Aboriginal contexts. For example, the prescription of treatments during pregnancy suggests that for many Aboriginal people, care for others can encourage greater care for the self. These women described being a parent as providing something to live for, which then becomes a reason to take medication. There is much potential to improve treatment uptake in Aboriginal women beyond the terms of their pregnancies. However, this is only likely if regimens suit the social and cultural context of everyday life. Whereas the development of new medications with easier prescribing regimens would be welcomed by all, it will particularly benefit those living in difficult social circumstances.
This study also indicates that Aboriginal people are more open to treatments made available through broad-based health services. Health services that are too narrowly focused may miss the opportunity to initiate trusting relationships with Aboriginal clients and their families . By embracing the value of community in Aboriginal conceptions of health, services can assist Aboriginal people in managing their treatment needs in relation to their social and community life .
For the Aboriginal participants in this study, both HIV infection and treatment uptake are intimately connected to issues of shame and social acceptance, family and parenting, domestic life and everyday routines. Although not averse to ART, participants were not willing for medication to impact their capacity to take part in everyday activities, as a cultural marker of health within family and community contexts . Therefore, services that understand Aboriginal social and cultural values of social participation, family and collectivity are more likely to support people in managing HIV in the context of their everyday lives.
The authors would like to thank the research participants who opened their hearts to share their stories. The project was endorsed by the Western Australian Indigenous Sexual Health Advisory Committee, and important contributions were made by the Project Steering Committee and Reference Group.
Sponsorship: The project was funded by the Office for Aboriginal and Torres Strait Islander Health and the Department of Health Western Australia. The National Centre for HIV Social Research is supported by the Australian Government Department of Health and Ageing.
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