Hepatitis C-change: Executive summary

http://www.agd.nsw.gov.au/

Key conclusions                      

            The evidence to this Enquiry clearly demonstrates that hepatitis C is a highly stigmatized condition and that discrimination against people with hepatitis C is rife. Such discrimination is often driven by irrational fears about hepatitis C infection, due to an inadequate understanding of how hepatitis C is transmitted. However, a perhaps more powerful driving force for discrimination than ignorance about hepatitis C transmission, is that infection is inextricably linked with illicit drug use, a highly stigmatized behavior. Evidence to this Enquiry makes it abundantly clear that discrimination against people with hepatitis C is often motivated by stereotyped responses towards people on the basis of past, current or assumed injecting drug use.

Hepatitis C related discrimination takes many forms and occurs in many areas of public life. It is apparent from the evidence that hepatitis C related discrimination in health care settings is widespread and discrimination in employment is also commonplace. The Enquiry has heard a wide range of examples of discrimination experienced by people with hepatitis C, such as people being rejected by family and friends, ostracized in workplaces and communities, denied life insurance, and terminated from employment. So too, family and friends have been denied the right to view the body of a person known or assumed to be hepatitis C positive.

                       Discrimination often has a profound impact on the lives of people with hepatitis C; it frequently has damaging health, financial, social and emotional consequences both for people living with hepatitis C and for the community. The experience of discrimination acts as a deterrent to people accessing the health system, with all the consequences this brings for the health of people with hepatitis C and the community.

Specific conclusions and recommendations

§                    Health care settings

§                    Employment

§                    Custodial settings

§                    Insurance

§                    Funeral services

§                    Autopsies

§                    Educational settings

§                    Accommodation

§                    General community - family, friends, communities, media

§                    Stigmatization of injecting drug use

§                    Aboriginal and Torres Strait Islander people

§                    Culturally and linguistically diverse people

§                    Anti-discrimination and other complaint mechanisms

Health care settings

                       Health care settings were the most commonly reported context for hepatitis C discrimination. Evidence to this Enquiry demonstrates that hepatitis C related discrimination in health care settings is widespread and has significant ramifications for the health and well being of people with hepatitis C. Such discrimination undermines the relationship between people with hepatitis C and health care professionals, and can become a serious deterrent for people seeking health care. In order to effectively address hepatitis C related discrimination in health care settings a range of policy, legislative and educational responses are necessary.

Hepatitis C testing                      

The Enquiry recommends that:                       

        1. The Public Health Act 1991 (NSW) is amended to provide that hepatitis C testing of individuals is only carried out with their informed consent, except in specific cases of mandatory and compulsory testing authorized by law.

        2. NSW Health, in consultation with the Ministerial Advisory Committee on Hepatitis, develop a comprehensive hepatitis C testing circular, in line with the National Hepatitis C Testing Policy, outlining that hepatitis C testing should only occur with informed consent and accompanied by appropriate pre test information and post test counseling.

        3. NSW Health disseminate the hepatitis C testing circular to all Area Health Services for implementation in health care services within their jurisdiction.

        4. Area Health Services report to NSW Health on steps taken to implement the hepatitis C testing circular within 12 months of the circular's release.

5. The Ministerial Advisory Committee on Hepatitis and NSW Health disseminate and promote the hepatitis C testing circular to private sector health providers, in particular GPs, through the NSW office of the Royal Australian College of General Practitioners and the Divisions of General Practice in NSW.

6. The Ministerial Advisory Committee on Hepatitis consider mechanisms for ensuring provision of appropriate information to doctors and people with hepatitis C, upon provision by pathology laboratories of a positive hepatitis C test result, in addition to the education strategies outlined elsewhere in this report.                      

Confidentiality and privacy The Enquiry recommends that:

7. Section 17 of the Public Health Act 1991 (NSW) is amended to include hepatitis C and thereby provide a specific confidentiality provision in relation to non-disclosure of a person's hepatitis C status in the same terms as the Public Health Act currently provides in relation to HIV.

                   8. NSW Health, in consultation with the Ministerial Advisory Committee on Hepatitis, develop a circular, which provides clear guidelines on legal requirements in relation to hepatitis C and confidentiality.

                     9.   NSW Health disseminate the circular on hepatitis C and confidentiality to all Area Health Services for implementation in health care services within their jurisdiction.

                 10. The Ministerial Advisory Committee on Hepatitis and NSW Health disseminate and promote the circular on hepatitis C and confidentiality to private sector health providers, in particular GPs.

                 11. NSW Health revise its Privacy Code of Practice 1998 to include hepatitis C within the list of 'special information categories

                 12. Area Health Services take all necessary steps to promote compliance with privacy legislation and the Privacy Code of Practice 1998 within their health care facilities.

                 13. Area Health Services provide a report to NSW Health, within 12 months of the circular's release, on steps taken to: promote compliance with privacy legislation and the Privacy Code of Practice 1998 ensure implementation of the circular on hepatitis C and confidentiality.

Infection control

                       The Enquiry concludes that there is an urgent need to improve the implementation of standard infection control procedures, particularly in hospitals and dental surgeries. Continuing education is essential to reduce discrimination in health services and ensure the safety of both patients and health care workers.

The Enquiry recommends that:

                 14. Area Health Services ensure that: hepatitis C education for health care workers includes standard infection control procedures, and assesses health care workers knowledge of such procedures and their understanding of the rationale for standard infection control procedures all health services within their jurisdiction have in place standard infection control procedures appropriate to their health setting and that the implementation of standard infection control procedures occurs in the context of existing quality assurance systems at service level.

                 15. The Australian Dental Association (NSW Branch): undertake ongoing education concerning standard infection control procedures that incorporates the rationale for such procedures ensure that implementation of standard infection control procedures is adequately monitored link adequate systems for monitoring standard infection control procedures to accreditation of dental workplaces.    

Access to hepatitis C treatment

The Enquiry recommends that

                16. The NSW Ministerial Advisory Committee on Hepatitis consider and determine appropriate strategies to improve access to best practice therapy for people who currently inject drugs.

                 17. The NSW Ministerial Advisory Committee on Hepatitis consider and determine appropriate strategies to improve access to best practice therapy for people living in regional and rural communities.                  

Education and training

The Enquiry recommends that:

                  18. NSW Health, in conjunction with Area Health Services, ensure that health care worker hepatitis C education and training forms an integral part of Area Health Services' hepatitis C Strategies/Service Planning.

                19. NSW Health ensure that adequate funding is made available to Area Health Services to address the hepatitis C education and training needs of all health care workers.

                 20. Area Health Services allocate adequate resources for hepatitis C education, training and workforce development that encourages continuous learning, is integrated within management systems and linked to organizational strategic outcomes.

                21. Area Health Services provide hepatitis C education, training and workforce development for health care workers that: enables health care workers to examine their values, attitudes, stereotypes and myths associated with hepatitis C transmission, people with hepatitis C and people who have injected or do inject drugs supports implementation of standard infection control procedures and confidentiality policies and procedures ensures health care workers understand and comply with their obligations under anti-discrimination, privacy and related legislation.     

                 22. The National Review of Nursing Education examine existing opportunities for continuing professional education about hepatitis C for nurses and consider options for improving such opportunities.

                 23. The Ministerial Advisory Committee on Hepatitis ensure that the NSW Hepatitis C Treatment and Care Plan provides minimum standards for Area Health Services in the delivery of appropriate hepatitis C education, training and workforce development for all health care workers.

                 24. The following principles should guide the development and delivery of hepatitis C education and training for GPs. Education initiatives should: provide GPs with the opportunity to examine the values, attitudes, stereotypes and myths associated with hepatitis C transmission, people with hepatitis C, and people who have injected or do inject drugs include information about GPs' obligations under anti-discrimination, privacy and related legislation assist GPs to implement non-discriminatory policies and practices, including standard infection control and confidentiality policies, which support compliance with anti-discrimination and privacy legislation integrate hepatitis C education with related disciplines actively involve GPs, people with hepatitis C and those affected by hepatitis C in design and delivery.                

                 25. Pre-service tertiary training and educational institutions develop and incorporate hepatitis C specific education, including a focus on anti-discrimination, into their curricula for people training as nurses, doctors, dentists and other health care professionals.

Specific conclusions and recommendations: Employment

                       Submissions made to the Enquiry indicate that hepatitis C related discrimination in employment is the most common setting for discrimination, after health care settings. The Enquiry concludes that hepatitis C related discrimination in employment is extensive and takes many forms, including selection and recruitment practices which deter people from seeking employment, loss of employment and harassment in the workplace. Such discrimination often has devastating financial, social and emotional consequences.                 

                       It is clear that many employers do not understand their obligations under anti-discrimination law. Evidence indicates that many employers have an inadequate knowledge of hepatitis C transmission, the extent to which it is a risk in the workplace, and the rationale for standard infection control procedures. Hepatitis C education initiatives targeting key private and public sector employers are essential in order to address hepatitis C related discrimination in employment.

The Enquiry recommends that:

                26. The WorkCover Authority of NSW update and reissue the Code of Practice: HIV and other blood-borne pathogens in the workplace.

                27. The ADB establish an advisory committee to develop and deliver a Hepatitis C Workplace Education Strategy to ensure an effective and coordinated response to hepatitis C related discrimination in employment. The advisory committee should include representatives from the NSW WorkCover Authority, NSW Health, the NSW Labor Council, Privacy NSW, and relevant community, employer and union representatives.

               28. The Hepatitis C Workplace Education Strategy should include activities that support and promote: effective implementation of appropriate workplace policies in relation to non-discriminatory selection and recruitment, in compliance with anti-discrimination law adequate and appropriate workplace training regarding the rights and obligations of employers and employees under anti-discrimination law effective implementation of appropriate workplace policies in relation to infection control, in compliance with the WorkCover Authority of NSW's Code of Practice: HIV and other blood-borne pathogens in the workplace, as updated, and OH&S law effective implementation of workplace policies on confidentiality and privacy, in compliance with privacy laws.

              29. The NSW Government provide adequate funds for the development and implementation of the Hepatitis C Workplace Education Strategy.

                30. The NSW Government amend the ADA to include discrimination on the ground of profession, trade, occupation or calling.                              

Specific conclusions and recommendations: Custodial settings

                       People in custodial settings should have access to health care services and programs of a standard equivalent to that available in the community. While evidence to the Enquiry indicates that discrimination on the basis of inmates' hepatitis C status does occur, the most pressing concerns raised are in relation to access to health care, health promotion and hepatitis C prevention programs and services for prisoners, regardless of whether they have hepatitis C. Impediments to the effective delivery of health care and health promotion services in custodial settings have significant and detrimental consequences for the health of all prisoners, including many hepatitis C positive inmates in the NSW correctional system.

Access to health care The Enquiry recommends that:

                       31. NSW Health recognize the importance of the integration of health promotion and hepatitis C prevention within the clinical service delivery provided by the CHS, and ensure that the health promotion and hepatitis C prevention services provided by the CHS are adequately funded.

                       32. NSW Health ensure adequate resources are provided for the capacity building necessary to enable the effective implementation of the CHS hepatitis C continuum of care, including implementation of specific protocols incorporating health promotion, prevention, services for newly diagnosed inmates, ongoing clinical management and discharge planning.

           33. The DCS and the CHS develop and implement protocols to enable effective discharge planning to maximize prisoners' access to health services post release.

                       34. NSW Health, in conjunction with the CHS, other relevant Area Health Services and the DCS, develop service protocols to improve prisoners' access to hospitals for day-only procedures and agreed mechanisms for linking prisoners into health services in the community, post release.

                        35. The NSW Ministerial Advisory Committee on Hepatitis give consideration to the emerging scientific literature that indicates that liver biopsy may not be mandatory in order to determine whether treatment is indicated and, if appropriate, enable the use of serological markers to assess liver damage, in order to maximize inmates' access to hepatitis C treatment.

                        36. The DCS provide the NSW Ministerial Advisory Committee on Hepatitis with the report arising from the review of the Alcohol and Other Drugs and HIV Health Promotion Units and updated information as requested by the Committee to enable the Committee to examine whether the health promotion and hepatitis C prevention education services and programs provided by the DCS are adequate to meet demand.

                      37. The DCS evaluate the currency of information in the HIV/AIDS communicable diseases and health promotion policies and procedures, particularly the coverage of hepatitis C, and the extent to which these policies and procedures reflect current practice.

                       38. The DCS update the HIV/AIDS communicable diseases and health promotion policies and procedures, in line with the review and evaluation findings.

                      39. The DCS ensure the effective implementation of revised policies and procedures, with particular emphasis on education and training in relation to standard infection control procedures and a systematic approach across the correctional system to the provision of information and education to inmates about hepatitis C prevention and health promotion.

Hepatitis C prevention The Enquiry endorses the following recommendations and/or proposals for policy or service reform considered in this Report:

                       40. The NSW Ministerial Advisory Committee on Hepatitis investigate and report on the appropriateness of introducing a needle and syringe exchange program, modeled on the successful European trials, into the State's correctional system and, if necessary, develop guidelines for the program's implementation.

                       41. The Minister for Corrective Services ensure that adequate bleach dispensing machines are available in all correctional centers enabling inmates to access bleach freely and anonymously. Bleach programs should be administered as a hepatitis C control measure and should not be linked to drug surveillance.

                       42. NSW Health ensure that the CHS has adequate resources to meet the treatment needs of opiate dependent inmates, particularly to ensure access to methadone, and other therapeutic options such as naltrexone and buprenorphine.

                       43. The Minister for Corrective Services enable tattooing to be available in hygienic conditions within the NSW correctional system. Consideration should be given to: trialing the availability of professional tattooists in the correctional system training inmates in the infection control procedures necessary for safe tattooing and supplying inmates with single use ampoules of ink and autoclaves.

                      44. The Minister for Corrective Services give consideration to differentiating between the punishment for the use of cannabis and injectable drugs in custodial settings.

                       45. The NSW Government increase the range of non-custodial and diversionary programs to reduce incarceration.

Specific conclusions and recommendations: Insurance

                       The evidence to the Enquiry indicates: that people with hepatitis C are being routinely refused insurance or dissuaded from applying for insurance that it is common for applications for insurance to be refused without regard to medical evidence about people's individual prognoses such policies and/or practices are inconsistent with current natural history research and clinical evidence about hepatitis C disease progression.

The Enquiry recommends that:

                       46. HREOC's proposed public inquiry into insurance discrimination, depression and anxiety disorders be expanded to an inquiry into disability discrimination and insurance to enable hepatitis C related discrimination to be considered.

                      47. HREOC encourage the participation of key community and industry stakeholders and research bodies including the Investment and Finance Services Association, the Institute of Actuaries of Australia, the Australian Hepatitis Council, the Australian Intravenous League and the National Centre in HIV Epidemiology and Clinical Research.

Specific conclusions and recommendations: Funeral services

The evidence to the Enquiry indicates that: family and friends of deceased persons known or assumed to be hepatitis C positive, are routinely denied the right to view the body the rationale for refusal on public health grounds, cited by the funeral industry, is inconsistent with the Public Health Act 1991 (NSW) and Public Health Regulations 1991 (NSW).

The Enquiry recommends that:                            

                       48. In the context of any proposed changes to the Public Health Act 1991 (NSW) and Public Health Regulations 1991 (NSW), that specific reference to funeral industry practices in relation to the handling of bodies should be retained in the Public Health Regulations.

                       49. NSW Health, in conjunction with relevant government departments, industry bodies and consumer representation, develop and implement guidelines in relation to the funeral industry, including in relation to the handling of bodies, to ensure compliance with the Public Health Act 1991(NSW) and Public Health Regulations 1991 (NSW), or such other public health legislation as may be enacted.

                       50. The WorkCover Authority of NSW, in conjunction with relevant government departments, industry bodies and community representation, develop a Code of Practice on infection control for NSW funeral industry workplaces pursuant to OH&S legislation.

                       51. The WorkCover Authority of NSW, in conjunction with relevant government departments, work with industry bodies and relevant community agencies to ensure appropriate education and workforce development within the funeral industry to enable effective implementation of the Code of Practice on infection control for NSW funeral industry workplaces.

                       52. The NSW Government amend the definitions of 'relative' and 'associate' in the ADA to provide coverage where a person alleges they have been discriminated against on the basis of the disability of a relative or associate who is deceased.

Specific conclusions and recommendations: Autopsies

                       Evidence to the Enquiry indicates that: the NSW Institute of Forensic Medicine (Glebe Morgue) has a policy of not reconstructing the bodies of deceased persons with hepatitis C after autopsy and that in cases where viewing of the body is not arranged prior to autopsy, family and friends may be denied the right to view the body the policy of the NSW Institute of Forensic Medicine appears to be inconsistent with current autopsy policies and practices elsewhere in NSW and other jurisdictions.

The Enquiry recommends that:

                       53. Central Sydney Area Health Service determine whether the NSW Institute of Forensic Medicine's policy has been to refuse to reconstruct bodies where the deceased is known or suspected of being hepatitis C infected.

                       54. Central Sydney Area Health Service ensure that the Division of Laboratory Medicine, undertaking the work of the Institute of Forensic Medicine, develops and implements a policy on reconstruction of bodies which provides that every effort is made to ensure that the viewing of bodies occurs before an autopsy takes place and, where viewing has not occurred prior to autopsy, that the bodies of deceased persons are reconstructed to enable family and friends to view the body where requested.

                      55. NSW Health ensure that the proposed statewide statutory authority, the Forensic Medicine and Pathology Authority, once established, develops and implements a policy on reconstruction of bodies which: applies to all agencies within the jurisdiction of the Forensic Medicine and Pathology Authority provides that every effort is made to ensure that the viewing of bodies occurs before an autopsy takes place and, where viewing has not occurred prior to autopsy, that the bodies of deceased persons are reconstructed to enable family and friends to view the body where requested.

                       56. NSW Health's Draft Infection Control Policy is amended to provide that every effort is made to ensure that the viewing of bodies occurs before an autopsy takes place and, where viewing has not occurred prior to autopsy, that the bodies of deceased persons are reconstructed to enable family and friends to view the body where requested.

Specific conclusions and recommendations: Educational settings

The Enquiry concludes that: there is a need for a stronger and more integrated policy response to hepatitis C education in schools efforts need to be made to improve policies and procedures in relation to standard infection control procedures and confidentiality in NSW educational institutions school-based education needs to address the stigma and discrimination associated with hepatitis C and its relationship to injecting drug use

Infection control

The Enquiry recommends that:

                       57. NSW DET's Prevention of transmission of hepatitis policy is amended to ensure that standard infection control procedures are applied regardless of whether a staff member or student is known to have hepatitis C and the document accurately reflects the differences between the modes of transmission for hepatitis A, B and C.

           58. NSW DET support the amended policy with an implementation strategy to ensure that the policy is implemented within educational institutions.

           59. Educational institutions report to NSW DET on steps taken to implement the policy within 12 months of the policy's release.

Confidentiality

The Enquiry recommends that:

                       60. NSW DET develop clear and accessible privacy and confidentiality guidelines, which ensure that DET complies with their obligations under the NSW PPIP Act and that appropriate strategies are in place to protect the confidentiality of staff and students with hepatitis C.

                     61. NSW DET support privacy and confidentiality guidelines with an implementation strategy to ensure that the policy is implemented within educational institutions

                       62. Educational institutions report to NSW DET on steps taken to implement the policy within 12 months of the policy's release. Secondary school education The Enquiry notes that NSW DET is currently developing curriculum support materials for secondary students related to hepatitis.

                       63. In formulating the curriculum for secondary students related to hepatitis the Enquiry recommends that: consideration is given to the National framework for education about STIs, HIV/AIDS and blood borne viruses in secondary schools and the NSW Survey of High School Students 2000 the curriculum enables students to examine the values, attitudes, stereotypes and myths associated with hepatitis C transmission, people who have hepatitis C and those most at risk of infection the curriculum addresses discrimination against people who have hepatitis C or are thought to have hepatitis C and discusses anti-discrimination laws the curriculum ensures students are taught how to be blood aware and adopt standard infection control guidelines in all situations where blood is present.                  

Anti-discrimination legislation

                       64. The NSW Government repeal the broad exception for private educational authorities in the ADA.

Specific conclusions and recommendations: Accommodation

                       The Enquiry concludes that there is inadequate evidence to determine the extent of discrimination in accommodation against people who use drugs, have used drugs or are assumed to use drugs, particularly given the problems of proof which are commonly associated with allegations of discrimination in the private rental market. Given that there was insufficient evidence provided to the Enquiry regarding discrimination in the provision of accommodation, no recommendations are made on this issue.

Specific conclusions and recommendations: General community - family, friends, communities, media    

                       The Enquiry concludes that people with hepatitis C are often shunned and ridiculed by their own friends, families and communities, leading to increased social isolation and a lack of adequate support. There is also evidence that serious harassment and vilification of people with hepatitis C does occur. There is a need to improve community understanding about hepatitis C. However, significant steps have been taken in recent years to address the level of community understanding about hepatitis C and there are limits to the extent to which knowledge of hepatitis C transmission alone will assist in eliminating discrimination against people with hepatitis C. The Enquiry is of the view that should a social marketing campaign be undertaken, reducing stigmatization associated with injecting drug use should be a primary aim. However, there was insufficient evidence before the Enquiry to determine whether a social marketing campaign would be effective in addressing hepatitis C related discrimination.

The Enquiry recommends that:

                       65. The NSW Government amend the ADA to include vilification against people with disabilities, including hepatitis C, which covers conduct that is offensive, insulting, humiliating or intimidating.

Specific conclusions and recommendations: Stigmatization of injecting drug use

                Evidence to the Enquiry indicates that the stigma associated with injecting drug use often leads to discrimination against people who have a history of drug use, currently inject drugs or are on drug treatment programs. Such discrimination is widespread and has damaging consequences, both for individuals and for the community. The Enquiry concludes that strategies designed to address discrimination against people on the basis of their past, current or assumed drug use must be an integral part of responding to hepatitis C related discrimination.           

The Enquiry recommends that:

                       66. Education initiatives which are designed to address discrimination against people with hepatitis C in employment and health care settings must also examine and challenge stereotypes associated with injecting drugs.

                       67. The NSW Ministerial Advisory Committee on Hepatitis ensure that the NSW Hepatitis C Treatment and Care Plan provides services and programs which are appropriate for and accessible to people who inject drugs and address the specific health care needs of people who are injecting drug users.

                       68. The NSW Ministerial Advisory Committee on Hepatitis, in conjunction with NSW Health and Area Health Services, develop and implement strategies to improve compliance with NSW Government harm reduction strategies, and improve State and local leadership for harm reduction measures.

                       69. The NSW Police Service examine and implement strategies to increase compliance with NSW Police Service guidelines for support of needle and syringe exchange and methadone programs and provide a report to the NSW Ministerial Advisory Committee on Hepatitis on steps taken to improve compliance.

The Enquiry endorses the recommendation of the NSW Drug Summit that:

                       70. The NSW Government repeal section 11 of the Drug Misuse and Trafficking Act 1985 dealing with use or possession of equipment for use in the administration of a prohibited drug.

Specific conclusions and recommendations: Aboriginal and Torres Strait Islander people

                       The Enquiry concludes that Aboriginal and Torres Strait Islander people are particularly vulnerable to hepatitis C infection given the disproportionate representation of Indigenous people in the NSW prison system and the poorer standard of health of Indigenous people generally. Not all hepatitis C related health services are delivered by Aboriginal controlled health services. This underscores the need for mainstream health services to work in partnership with Aboriginal Medical Services to ensure culturally appropriate hepatitis C service delivery and education initiatives.

                      71. The Enquiry recommends that the following principles should guide the development and delivery of hepatitis C education and services for Aboriginal and Torres Strait Islander people: partnerships between mainstream health services and Aboriginal Medical Services should be encouraged hepatitis C education initiatives, designed to increase compliance with anti-discrimination law, should incorporate the intersection of hepatitis C discrimination with other forms of discrimination including race discrimination education resources and services should be culturally appropriate.

Specific conclusions and recommendations: Culturally and linguistically diverse communities

The Enquiry recommends that:

                       72. The NSW Ministerial Advisory Committee on Hepatitis ensure that the NSW Hepatitis C Treatment and Care Plan provide services, programs and educational resources, which are appropriate for and accessible to people from culturally and linguistically diverse communities.

Anti-discrimination and other complaint mechanisms

                       The Enquiry concludes that: anti-discrimination and other complaint-based systems are under-utilized by people with hepatitis C people with hepatitis C are often unaware of their rights under anti-discrimination law anti-discrimination complaint-based systems place a significant burden on individuals to enforce their rights people with hepatitis C face significant barriers in utilizing complaint mechanisms provided by anti-discrimination and other legislation individual complaint-based systems are inadequate to address systemic discrimination.

The Enquiry recommends that:

                       73. The Hepatitis C Council and NUAA, in partnership with the ADB, design and implement an anti-discrimination advocacy program to enhance the capacity of the Hepatitis C Council of NSW and NUAA to identify discrimination or unfair treatment actionable under anti-discrimination and other relevant legislation support individual access to and use of anti-discrimination and other complaint mechanisms.

                       74. The NSW Government provide adequate resources to the Hepatitis C Council of NSW and NUAA to develop and implement the above program and provide ongoing individual advocacy services

                       75. The NSW Government amend the ADA to enable: the President to initiate complaints under the ADA the President to intervene in applications for original decisions and Appeal Panel matters.

                       76. The NSW Government amend section 118 of the ADT Act so that the Appeal Panel can refer a question of law to the Supreme Court, for an opinion of the Court, at the request of the President

                       77. The NSW Attorney General's Department ensure that the ADB is provided with sufficient resources to: enable the timely handling of complaints take action to address systemic discrimination, such as initiating complaints and intervening in ADT proceedings.

                       78. The NSW Government enact specific legislation dealing with privacy of health information as recommended by the NSW Ministerial Advisory Committee on Privacy and Health Information.

                       79. The NSW Government ensure that the NSW Privacy Commissioner is adequately resourced to fulfill this expanded role.

C-change: Conclusions

                       The evidence to this Enquiry clearly demonstrates that hepatitis C is a highly stigmatized condition and discrimination against people with hepatitis C is rife. Such discrimination is often the result of an inadequate understanding of the transmissibility of hepatitis C, and consequently driven by irrational fears about hepatitis C infection. However, perhaps more powerful than ignorance about hepatitis C transmission, is that hepatitis C infection is inextricably linked to illicit drug use, which is highly stigmatized behavior. Evidence to this Enquiry makes it abundantly clear that discrimination against people with hepatitis C is often motivated by stereotyped responses towards people on the basis of past, current or assumed injecting drug use. The mere fact that a person has a history of injecting drug use or is currently using drugs should not be arbitrarily used as a rationale for denying people access to services or employment or for treating them in any other discriminatory manner

                           Precisely because of the confounding of hepatitis C with injecting drug use, addressing discrimination on the basis of drug use must be an integral part of responding effectively to hepatitis C related discrimination. When we speak of hepatitis C related discrimination, it must be understood that this necessarily includes discrimination associated with illicit drug use, although, as we have noted, not all injected drugs are illicit.

                       Information about a person's hepatitis C status is highly sensitive. It is common for people with hepatitis C to live with constant fear about their hepatitis C status becoming known. There is little wonder that this is the case given the adverse consequences that so often flow when a person discloses their hepatitis C status or where breaches of confidentiality occur. The right to privacy and confidentiality has been described as the first line of defense against discrimination: the successful defending of these rights usually offers some protection against a variety of forms of discrimination.  (Heywood, M. and Altman, D. 2000 Confronting AIDS: Human rights, law, and social transformation, Health and Human Rights - An International Journal, Vol. 5, No. 1 at page 153.) Ensuring that people's rights to confidentiality and privacy are protected is of critical importance. Nonetheless, in and of itself, protecting people's privacy and confidentiality does not go to the heart of the problem - the stigma associated with hepatitis C infection and injecting drug use.

                       Hepatitis C related discrimination takes many forms and occurs in many areas of public life. The Enquiry has heard a wide range of examples of discrimination experienced by people with hepatitis C such as people being rejected by family and friends, ostracized in workplaces and communities, denied life insurance, and terminated from employment. Family and friends have been denied the right to view the body of a person known or assumed to be hepatitis C positive.

                   Health care settings were the most widely reported context for hepatitis C related discrimination. It is apparent from the evidence that hepatitis C related discrimination in health care settings is widespread. In its most overt form, people are refused health care services and treatment on the basis of their hepatitis C status or past, current or assumed drug use. In its more subtle forms, people are made to feel that they have less entitlement to quality health care, undermining their sense of self worth.

                  Second only to discrimination in health care settings is discrimination in employment. Discrimination in employment is extensive. The evidence highlights that selection and recruitment practices deter people with hepatitis C from seeking employment, and loss of employment and harassment in employment are commonplace. So too, impediments to the effective delivery of health care and health promotion services in custodial settings have significant and detrimental consequences for the health of all prisoners, including many inmates with hepatitis C in the NSW correctional system. In turn this impacts upon the families of prisoners and others in the community to whom they return, many after serving relatively short sentences. The demonstrably high risk of hepatitis C infection within the correctional system is unacceptable and needs to be urgently addressed.

                       Discrimination often has a profound impact on the lives of people with hepatitis C, including damaging health, financial, social and emotional consequences both for people living with hepatitis C and for the community. The experience of discrimination acts a deterrent to people accessing the health system, with all the consequences this brings, for the health of people with hepatitis C, their families and the community. The fear of stigma and discrimination can lead people who believe they might already have contracted hepatitis C, to be reluctant to seek testing for hepatitis C. Not seeking out testing limits the possibility of either considering appropriate treatment options or taking actions to manage their health effectively. It also means that people with hepatitis C are less likely to be in contact with health and support services and are harder to reach with information about hepatitis C prevention. Discrimination in the workplace leads to people being sacked or forced to leave their jobs. Discrimination in selection and recruitment practices act as a significant deterrent to people with hepatitis C applying for work.

                      The lived experience of hepatitis C discrimination is not easily understood solely from the perspective of discrimination as defined by anti-discrimination legislation. Many of the issues raised by people during the course of the Enquiry may not necessarily be resolved by resort to anti-discrimination complaint systems. It is also clear that the evidence does raise examples of discrimination, which may be actionable under anti-discrimination legislation, yet few complaints are made under federal or NSW anti-discrimination legislation. It is apparent that there are real limits to the capacity of individual complaint mechanisms to adequately address hepatitis C related discrimination. This is due, in part, to the barriers people face in accessing anti-discrimination and other complaint mechanisms. Nonetheless, the significance of anti-discrimination legislation lies not only in the remedies that the law provides where a person has been discriminated against. By making hepatitis C discrimination, harassment and victimization in public life unlawful, we collectively make a statement about how we expect everyone to be treated - with dignity and respect. These principles of equality and non-discrimination are enshrined in the legislation, providing a framework for reducing and eliminating hepatitis C discrimination.

                       It is evident that hepatitis C related discrimination requires a multi-faceted approach. Organizational infrastructure needs to provide clear policies and support practices, which protects people's privacy and confidentiality, and ensures the implementation of standard infection control. Education initiatives are vital to reducing the incidence of discrimination by enabling people to understand how hepatitis C is transmitted and the means by which the risks of transmission can be reduced. It also encourages people to challenge the validity of moral judgments about illicit drug use and stereotyping of people who have injected or do inject drugs. The people affected by hepatitis C related discrimination need to be better informed about their rights and supported to utilize complaint mechanisms. Anti-discrimination legislation needs to be strengthened to ensure systemic discrimination is not solely reliant upon individuals lodging complaints.

                       The intricate relationship between health and human rights embraces not only civil and political rights but - perhaps first and foremost - the right to health. (Mhloyi, M. 1995 Health and human rights: An international crusade, Health and Human Rights - An International Journal, Vol. 1, No. 2 at page 125.)

                       The association of 'disease' with stigmatized behavior has often lead to discrimination. Societies have shown a distressing record of treating people with particular diseases as outcasts and denying them fundamental human dignity. Take for example the appearance of certain sexually transmitted infections in the fifteenth century. (This historical context is considered in more detail in the Foreword to this report.) Such response have been more recently exposed in reactions to the appearance of HIV/AIDS in the 1980s.

                       The critical role that protection of human rights has to play in responding to public health challenges has burgeoned in the wake of the global HIV/AIDS pandemic. Such discourse has recently had a significant influence on policy, legislative and service responses to HIV/AIDS, both internationally and domestically.

                       The realization of human rights was indeed critical to the survival and dignity of people living with HIV, but it was also a critical component of reducing the risk of acquiring infection among those whose vulnerability was determined by inequalities and stigma associated with a host of attributes including race, gender, social and economic status, sexuality and behaviors. (Tarantola, D. 2000 The shifting HIV/AIDS paradigm: 20 years and counting, Health and Human Rights - An International Journal, Vol. 5, No. 1 at page 2.)

                       The parallels between earlier diseases, HIV/AIDS and hepatitis C are clearly evident. Protection of the human rights of people with hepatitis C, and those most at risk of infection, particularly people who inject illicit drugs, is critical to an effective response to hepatitis C. It is also the least we can expect if we wish to be regarded as a decent and compassionate society.