- Strategies to improve access to testing need to be developed locally and reflect local HCV transmission routes, risk practices and patterns of health service use.
- Local pre-test and post-test discussion guidelines should take into account local issues of stigma and shame.
- Fear of breaches of patient confidentiality may be reduced through the development and publication of local confidentiality policies and the use of short-incubation tests as appropriate.
- Specific State and Territory and regional initiatives are needed to improve access to confidential testing and continuity of care for Aboriginal and Torres Strait Islander people moving through the corrections system.
4.1. BackgroundFor more information and background on hepatitis C testing for Aboriginal and Torres Strait Islander people, refer to Appendix 5.
The first objective of the National Aboriginal and Torres Strait Islander Sexual Health and Blood Borne Virus Strategy 2005-20088 (NATSISH and BBV Strategy) is to improve access to testing, diagnosis, treatment and care of hepatitis C, HIV/AIDS, STIs and other blood borne viruses for Aboriginal and Torres Strait Islander people. It is important to align the goals of this testing policy with current epidemiology around routes of transmission of HCV among Aboriginal and Torres Strait Islander people, including the higher rate of infection.
Improving access to testing requires an awareness of the differences among groups within the Aboriginal and Torres Strait Islander populations and the distinctive barriers that exist in their access. It may require local primary health services to develop locally adapted approaches for young people, prisoners, people who inject drugs and women.
These approaches will be best developed in the context of strong local partnerships between the Aboriginal community-controlled health sector and mainstream services that specialise in the provision of services to clients at higher risk for hepatitis C, HIV, STIs and other blood borne viruses (e.g. sexual health clinics, family planning services, AIDS Councils and services for injecting drug users). Coordination and leadership from State and Territory Aboriginal and/or Torres Strait Islander Sexual Health Committees may be needed to encourage partnerships that develop innovative and locally relevant approaches to service provision and raising awareness in the Aboriginal and Torres Strait Islander community about the need for testing, treatment and management of hepatitis C.
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4.2. Pre-test and post test discussionFor many Aboriginal and Torres Strait Islander people, high levels of stigma are associated with hepatitis C. The stigma associated with the illness is compounded by its transmission through routes that are also highly stigmatised, such as drug use. Shame for some Aboriginal and Torres Strait Islander people may be incapacitating in the context of hepatitis C testing, particularly if there are differences between individual and practitioner in terms of race, age and gender. In some areas of the country ceremonial status, moiety and clan may also be important, particularly in contexts where blood has a ceremonial significance. Policies must be developed locally, so that health care workers are correctly advised and health services generate culturally appropriate policies and programs.
Local health service providers need to take these matters into account when developing a testing policy, and in the guidelines around provision of pre-test and post-test discussions. Some success has been achieved in clinics providing pre-test information on cassette or CD recorded in local language or plain English, so that the individual can listen to it privately through headphones without shame. The use of interpreters should also be considered.
4.3. ConfidentialityAn added complication is that fear of a positive test may include fear of a breach of confidentiality, made worse when the provider is known to the person or when the test is provided in a local clinic that employs members of the person’s family or community. Particularly in rural and remote clinics, the provision of any pathology test may routinely involve documentation passing through a number of hands, and results may be filed with relatively open access. Any variation to this routine may publicly signal that a “confidential” test is being done and unintentionally breach the person’s right to privacy. There is no evidence that this fear is realistic, but it is likely to provide an additional barrier to someone seeking a test. Local health service providers should ensure that local guidelines regarding testing have agreed protocols on the handling of confidential information.
A publicised confidentiality policy may assist in reducing this barrier to testing. Such a policy should state that clients’ privacy and confidentiality will be respected. It should refer to relevant State or Territory legislation that governs privacy and confidentiality and note that all staff have been trained in the confidentiality requirements of providing care in that service. The policy should also outline a grievance procedure if a client feels that their confidentiality has been breached. It may give examples of what will be done with a person's information, and what will not be done with it. It may also detail areas where the person's right to privacy cannot be respected, for example, where mandatory reporting is required under other State or Territory legislation.
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4.4. Aboriginal and Torres Strait Islander PrisonersPrison settings have been identified as a risk environment for transmission of hepatitis C, as well as for other STIs and blood borne viruses. Strategies to improve access to prevention measures, testing, treatment and care should include provision of continuity of care for those affected by HIV, STIs and hepatitis C. There is a disproportionate representation of Aboriginal and Torres Strait Islander people in prison settings and juvenile detention centres, and risk of transmission is increased with considerable movement of people in and out of the prison system.
Specific initiatives at the state and territory and regional levels should be developed in partnership between State and Territory Departments of Corrections, State and Territory Health Departments, prison service providers and the Aboriginal and Torres Strait Islander community-controlled health sector. Such initiatives could include improved access to testing in prisons including routine risk assessment conducted in a culturally safe manner, preventive approaches that consist of health promotion and prevention education, and re-entry to the community strategies for prisoners.