Hepatitis B in Queensland: A situation analysis, May 2011

Transcription

1 Hepatitis B in Queensland: A situation analysis May

2 Hepatitis B in Queensland: A situation analysis, May 2011 This paper provides a summary of key findings from the work undertaken to date by the Queensland Health Hepatitis B Working Group formed as a result of discussions at the 2010 Meeting of Viral Hepatitis Clinicians. The paper provides a snapshot of the current situation in Queensland in relation to hepatitis B, a significant public health issue for particular populations within the Queensland community. Those most impacted by hepatitis B are peoples from the Aboriginal and Torres Strait Islander population and some groups of people from culturally and linguistically diverse backgrounds, especially those born in countries of high prevalence. Effective information systems and health service planning to inform and address the current demand and future impact of hepatitis B on Queensland health services will be critical for effective management of this public health issue. Contributors Tanya Bain, Communicable Diseases Branch, Queensland Health Gary Boddy, Communicable Diseases Branch, Queensland Health Angela Cooper, Townsville Sexual Health Service, Queensland Health Emma Dalglish, Hepatitis Queensland Yvonne Drazic, James Cook University Dr Patricia Fagan, Cairns Public Health Unit, Queensland Health Zhihong Gu, Ethnic Communities Council of Queensland Rhondda Lewis, Cairns Sexual Health Service, Queensland Health Dr Annie Preston-Thomas, Cairns Public Health Unit, Queensland Health Hepatitis B in Queensland: A situation analysis, May 2011 Published by the State of Queensland (Queensland Health), November 2011 ISBN: This document is licensed under a Creative Commons Attribution 3.0 Australia licence. To view a copy of this licence, visit creativecommons.org/licenses/by/3.0/au State of Queensland (Queensland Health) 2011 You are free to copy, communicate and adapt the work, as long as you attribute the State of Queensland (Queensland Health). For more information contact: Communicable Diseases Branch, Queensland Health Level 1, 15 Butterfield Street, Herston QLD

3 CONTENTS SUMMARY INTRODUCTION Hepatitis B Working Group Purpose Role and function of the working group Membership Methodology Context National Strategies Closing the gap Towards Q2: Tomorrow's Queensland Queensland multicultural policy Queensland Health Strategic Plan Queensland HIV, Hepatitis C and Sexually Transmissible Infections Strategy Health Protection Strategic Directions EPIDEMIOLOGY Worldwide Hepatitis B within Australia Queensland Vaccination Testing Natural history Burden of disease Future projections PRIORITY POPULATIONS: CULTURALLY AND LINGUISTICALLY DIVERSE COMMUNITIES Continued increase in chronic hepatitis B population from diverse backgrounds Key issues Unmanaged chronic hepatitis B Undiagnosed chronic hepatitis B Lack of hepatitis B knowledge and information Cultural barriers Lack of support Health priorities A need of culturally responsive services Special groups Overseas students visas skilled workers ISSUES FOR ABORIGINAL AND TORRES STRAIT ISLANDER PEOPLE(S) IN QUEENSLAND WITH CHRONIC HEPATITIS B INFECTION Prevalence rates History of Queensland response to hepatitis B Data quality Access to care Management and follow up Primary care Viral hepatitis nurses and clinics Specialist clinics

4 4.6 Education and resources Others factors IMMUNISATION AND CHILDHOOD INFECTION MANAGEMENT: ANTENATAL, POSTNATAL, PERINATAL AND CHILDHOOD CONSIDERATIONS Immunisation in Queensland Current immunisation and management best practice principles Current generally accepted best practice at birth Queensland Health Immunisation Program Australian Childhood Immunisation Register (ACIR) Vaccination information and vaccination administration systems (VIVAS) The management of perinatal infections Chronic hepatitis B recommendations Antenatal testing and blood-borne viruses, 2011 Australasian Society for HIV Medicine (ASHM) Paediatric gastroenterology services in Queensland Royal Children s Hospital (RCH): Queensland Paediatric Gastroenterology, Hepatology and Nutrition Service The Centre for Evidence Based Paediatric Gastroenterology and Nutrition PERSPECTIVE OF A PERSON LIVING WITH CHRONIC HEPATITIS B Personal perspective Research findings SERVICE PROVISION IN QUEENSLAND Queensland Health services snapshot Location of services Geographical reach of services Service populations Service activities Current staffing levels Data bases and systems current status and perceived gaps Patient resources Issues Long-term outcomes of chronic infection Co-infection Benefits of early detection, management and treatment of hepatitis B Evidence-based clinical practice guidelines and management protocols Limited access to services in geographical areas of high demand Number and acuity of referrals Other limiting factors for access to treatment Funding and service delivery models Clinical trials General practitioner engagement Role of non-government organisations State and national strategic directions and reporting Appendix 1 Queensland services supporting people with hepatitis B Appendix 2 Patient resources Appendix 3 Clinical resources Appendix 4 Perinatal management algorithms Appendix 5 State, national and international reports, policies and published articles 78 ACRONYMS REFERENCES

5 SUMMARY The challenge for the Hepatitis B Working Group has been to adequately describe the current situation in Queensland and the potential impact of hepatitis B on future planning for service delivery in the absence of quality information systems to support data collection and limited information specific to the populations most affected. This paper provides a summary of key findings from the work undertaken to date by the working group and makes recommendations towards future activities for discussion by participants of the 2011 Meeting of Viral Hepatitis Clinicians and other key stakeholders. A strategic priority for the Health Protection Directorate, Division of the Chief Health Officer (CHO) is to lead the development and implementation of statewide blood borne viruses (BBV) and sexually transmitted infections (STI) action plans, in partnership with stakeholders, including the development of a Viral Hepatitis Prevention and Control Action Plan and the associated Treatment and Management Framework. The consultation phase for development of the action plan and associated treatment and management framework commenced in March 2011 and will highlight key priorities for future action. Hepatitis B is a significant health issue for particular populations within the Queensland community, most significantly the Aboriginal and Torres Strait Islander population and some groups of people from culturally and linguistically diverse (CALD) backgrounds, especially those born in countries of high prevalence. Little Queensland specific hepatitis B data is available with demographics limited to age, gender, Indigenous status and health service district (HSD). Reported information in relation to CALD communities is limited and only consists of country of birth, yet this is unknown for per cent of notifications. Additionally, Aboriginal and Torres Strait Islander status is frequently not reported as it is not recorded on over 50 per cent (66 per cent) of notifications. Testing data, especially that undertaken through private laboratories, is currently not reported and is difficult to obtain. Hepatitis B infection can be prevented with a safe and effective vaccine that became available in Universal hepatitis B immunisation for infants and for some groups at high risk of infection has been implemented in Australia since Universal antenatal screening is also in place in Australia, with additional preventive treatment offered for neonates of infected mothers. Assuming the current vaccination uptake is maintained it is predicted the number of incident infections has peaked within Australia however with future estimates of migration this is unlikely to impact the total number of those living with chronic hepatitis B in the Queensland population. It is therefore doubtful that the burden of disease associated with hepatitis B will decrease and with only an estimated two per cent of the population currently on treatment, the future financial burden will be substantial. The risk of developing chronic disease from hepatitis B infection is much higher if the infection is acquired at birth or in early childhood. Treatment options are evolving. There is a need for establishment of nationally agreed evidenced-based clinical practice guidelines and management protocols for delivering optimal treatment, monitoring and management including guiding both general practitioners and specialists with low caseloads. 5

6 Hepatitis B can impact on category two waiting times due to the significant morbidity associated with late presentation. Late presentation is often seen in Aboriginal and Torres Strait Islander people(s), and people from Asia and Africa. Management of chronic hepatitis B infection requires the increased involvement of general practitioners. Hepatitis B serology can be confusing to the uninitiated, and this affects health worker confidence in approaching the disease. Specific health worker education and resources to assist education of patients are essential. There has been an increase in the number of people from overseas settling in Queensland since the 2006 census. In the 2008 calendar year, Queensland had a net gain of nearly 50,000 overseas migrants, with overseas migration being the largest component of Queensland s growth since Seven out of 10 top birthplace countries for settler arrivals to Queensland were from the high hepatitis B endemic region Asia-Pacific (excluding New Zealand). In addition to growth in population of people born in countries from the Asia-Pacific region there has also been growth in population of people born in countries of Africa, another region of high hepatitis B prevalence. African community populations have been increasing in Queensland mostly through student and skilled worker visas with many people going on to permanent resident status. It is expected that population increases will continue through family reunion provisions. Hepatitis B screening is not a part of the range of medical tests for most temporary and permanent visa entries. People who have been infected with hepatitis B and have never been tested before are unlikely to know their status until after they have been in Australia for many years. Many people falsely believe that they have been tested for all diseases before coming to Australia through the immigration process and therefore believe they don t need to test for hepatitis B. Understanding culture and beliefs of various CALD groups in Queensland is important to achieve better health outcomes. Culturally responsive services are very important to increase access services for people from CALD populations. Because of language, cultural and other barriers, people from CALD backgrounds may be reluctant, and sometimes fearful about approaching health services. Health services need to be equipped with practical knowledge and skills to deal with a range of issues associated with working with CALD patients. Cultural competency training at organisational, management and individual levels are equally important, which will help to achieve better health outcomes for clients from CALD backgrounds. In December 2007, the Council of Australian Governments (COAG) agreed to six targets for closing the gap between Indigenous and non-indigenous Australians. Of the six, the two health-specific targets are: to close the gap in Indigenous life expectancy within a generation (by 2033) to halve the gap in mortality rates for Indigenous children under 5 within a decade (2018). There is limited data about rates in Aboriginal and Torres Strait Islander Queenslanders of potential consequences of hepatitis B such as cirrhosis or hepatocellular carcinoma. A Queensland study of cancer incidence and mortality in rural and remote communities from found six Indigenous women developed liver cancer, compared with an expected incident number of 0.7, and 7 6

7 Indigenous men developed liver cancer, compared with an expected incident number of 1.8. There is evidence of limitations in the coverage of hepatitis B vaccination programs in Aboriginal and Torres Strait Islander populations. It has been suggested that in the first years of the catch-up program (perhaps the first decade) many Aboriginal and Torres Strait Islander people(s) were infected with hepatitis B despite vaccination. This was as a result of people missing out on a catch-up program, being vaccinated too late having been already exposed to the virus, or possibly receiving vaccine for which the cold chain had been breached. Hepatitis B immunisation coverage for Indigenous children has improved, although they often complete the immunisation course later than recommended. In the latest Australian Childhood Immunisation Register (ACIR) quarterly report, 85.6 per cent of Queensland, Aboriginal and Torres Strait Islander children are up-to-date with immunisations at months, and this number rises to 94 per cent for Aboriginal and Torres Strait Islander children aged months. Aboriginal and Torres Strait Islander status is not identified in 66 per cent of hepatitis B notifications, and thus Indigenous specific rates are likely to be underestimated. This is thought to be due to a number of reasons. A recent questionnaire of viral hepatitis clinic workers found that some respondents did not feel comfortable with asking clients about Indigenous status. There are also anecdotal reports of a failure by some laboratories to transfer Indigenous status into notification data. There are projects underway to improve data quality, essential for service planning. It s difficult to determine how many Aboriginal and Torres Strait Islander people(s) are currently prescribed medication for chronic hepatitis B, but all indications suggest that (as in the general population, but possibly to a greater degree) only a fraction of those who would be eligible for such treatment are receiving it. In summary, a suite of measures are needed to reduce the impact of chronic hepatitis B on the community and health services into the future. The key points raised in this report will be considered during the development of the Viral Hepatitis Prevention and Control Action Plan for Queensland, including the Queensland Hepatitis B and C Treatment and Management Framework. Measures should include: establishment of nationally agreed evidenced-based clinical practice guidelines and management protocols for delivering optimal treatment, monitoring and management including guiding both general practitioners and specialists with low caseloads implementation of benchmarking for adequate resourcing of the outpatient liver clinics in Queensland public hospitals. Health service planning and quality initiatives should aim to: improve the number of people with chronic hepatitis B receiving clinical management for their infection investigate ways to reduce barriers to testing and waiting times at clinics, including: - a systematic review of practices to minimise failure to attend rates - piloting other models of care, such as nurse practitioners, nurse led clinics and telehealth, particularly in relation to monitoring and maintenance therapy 7

8 - ensuring services are relevant and accessible to people from CALD communities - staffing levels are adequate to meet service demand improve service integration and referral pathways for clients with other comorbidities amongst patients including: - diabetes - mental health - haemophilia - alcoholic liver disease - infections arising from treatment side-effects - arthritis increase general practitioner engagement including facilitating access to education and training to support clinical management advocate for cultural competency training at organisational, management and individual levels to help achieve better health outcomes for clients from CALD backgrounds improve use of interpreter services investigate hepatitis B specific interventions for prison populations improve the quality of data recorded and available including Indigenous and ethnicity status provide appropriate training for data systems including culturally sensitive training to improve ability to ask about Indigenous status and ethnicity. The following strategies targeting Aboriginal and Torres Strait Islander people(s) are high priority for further action: improve prevention efforts and maximise coverage of childhood immunisations develop Indigenous-specific education and resources for both staff and patients of services develop strategies to address co-morbidity conditions such as heavy alcohol use and obesity improve clinical pathways to guide monitoring, relevant investigations and management, and apply a chronic disease model approach improve Indigenous identification on pathology requests and surveillance notifications include hepatitis B immune status testing at least once in adulthood as part of an adult health check improve access to culturally competent care including outreach specialist services and consider ways to increase treatment delivery and support in different settings develop a strategy to better enumerate the cohort of Indigenous Australians with chronic hepatitis B, for service planning and to monitor outcomes. 8

9 1.0 INTRODUCTION In May 2010, the inaugural meeting of viral hepatitis clinicians was held in conjunction with sexual health and HIV clinicians in Queensland. The chief health officer endorsed this annual meeting to: improve the quality of care for patients support the efficiency and planning of Queensland Health (QH) services for HIV/AIDS, viral hepatitis and STIs increase participation of QH clinical services in the prevention and early detection of BBVs and STIs. The meetings are considered an important strategic priority for the HIV/AIDS, Hepatitis C and Sexual Health Unit and are key activities informing the strategic planning process for the health protection program areas within the Communicable Diseases Branch, Health Protection Directorate. Health protection programs seek to safeguard the community from potential harm or illness caused by exposure to hazards, diseases or harmful practices. Achieving the best health outcomes for Queenslanders requires coordinated service delivery that uses a range of strategies such as surveillance, contact tracing, risk assessment, community education and advice, and application of regulatory standards and controls 1. Discussion arising from the 2010 meeting of viral hepatitis clinicians, identified priorities for action leading to the establishment of a number of working groups to further explore the issues raised. The working groups formed included: Queensland Liver Clinic Data Collection and Systems Planning Working Group Nursing Competency and Education Working Group Model of Telemedicine Working Group Triage Clinic Pilot Working Group Models of Care Review Working Group Hepatitis B Working Group. 1.1 Hepatitis B Working Group A range of issues regarding the current and immediate needs of the sector relating to hepatitis B were discussed at the 2010 meeting of viral hepatitis clinicians. These included: nurse roles now cover hepatitis B as well as hepatitis C but not resourced for much of this activity specific characteristics of the client population need to be addressed in management and treatment plans (e.g. CALD, refugees and others who do not know the health system) many people do not know what they are being tested for and there is a need for a standard approach to testing there are different models of care for people with hepatitis B across the state immigration processes re testing for hepatitis B and for hepatitis C need to be understood and challenged where appropriate models of care in HIV could be examined for possible ways forward in addressing hepatitis B 9

10 discussion of whether there should be separate hepatitis B clinics (distinct from hepatitis C clinics) there continues to be barriers to testing and ongoing monitoring does shared care with general practitioners (GPs) have a role in management models? Clinicians agreed that: the status quo of current services accommodating increasing numbers of clients with hepatitis B without additional resources was not sustainable a working party be set up to examine education required for the client population and on different models of care. The example given was the approach demonstrated in the bowel cancer model. A working group was established to examine two areas: 1. How programs addressing other health issues such as bowel cancer operate and how this could be developed or fed into proposed models of care for hepatitis B 2. Education required for the client population. However, following the initial meeting of the working group, the purpose, role and function of the working group were redefined and the following terms of reference endorsed: Purpose The purpose of the Hepatitis B Working Group is to describe the current hepatitis B situation in Queensland Role and function of the working group Identify and describe: - epidemiology - key service providers - particular issues for CALD and Indigenous communities - current management and treatment in liver clinics - summarise relevant state and national published reports The working group aim to produce a background paper for the 2011 meeting of viral hepatitis clinicians Membership The working group is comprised of the following members: Gary Boddy, Director, HIV/AIDS, Hepatitis C and Sexual Health Unit, Communicable Diseases Branch (Chair) A/Prof. Graeme Macdonald, Princess Alexandra Hospital, Queensland Health Rhondda Lewis, Health Promotion Officer (Viral Hepatitis) Cairns and Hinterland Health Service District (Secretariat), Queensland Health Clint Ferndale, Chief Executive Officer, Hepatitis Queensland (to March 2011) Zhihong Gu, Manager, HIV/AIDS, Hepatitis C & Sexual Health Program, Ethnic Communities Council of Queensland Dr John Hooper, Sexual Health Service, Darling Downs-West Moreton Health Service District, Queensland Health Angela Cooper, HIV/AIDS, Hepatitis C and Sexual Health (HAHCSH) Coordinator (Townsville), Queensland Health Tanya Bain, Team Leader Hepatitis C, Communicable Diseases Branch, Division of the Chief Health Officer 10

11 Andrew Young, Team Leader Indigenous and Other Populations at Risk, Communicable Diseases Branch, Division of the Chief Health Officer Dr Annie Preston-Thomas, Public Health Registrar (from April 2011), Queensland Health Emma Dalglish, Health Promotion Officer, Hepatitis Queensland (from April 2011) Yvonne Drazic, Community representative (from April 2011) Methodology The working group developed terms of reference and structured five meetings to occur over the life of the group with a view to report back to the 2011 meeting of viral hepatitis clinicians. Members met, discussed key concerns and agreed to research and develop a paper describing the current situation in Queensland. To support this process, from November 2010 to May 2011, members identified and reviewed a range of literature and consulted a variety of stakeholders to assist in the development of the paper. Additional members were co-opted to the working group to assist in preparation of the paper. Members also contributed to the development of questions posed through the online viral hepatitis snapshot survey questionnaire to services in QH to facilitate further consultation (Appendix 4). A paper was prepared and reviewed by the working group for inclusion in participant folders at the 2011 meeting of viral hepatitis clinicians. The challenge for the Hepatitis B Working Group has been to adequately describe the current situation in Queensland and the potential impact of hepatitis B on future planning for service delivery in the absence of quality information systems to support data collection and limited information specific to the populations most affected. This paper provides a summary of key findings from the work undertaken to date and makes recommendations towards future activities for discussion by the participants of the 2011 meeting of viral hepatitis clinicians and other key stakeholders. The discussion paper does not currently address community attitudes, stigma and discrimination which have a significant impact on people with hepatitis B infection. Further work is required to include relevant discussion of these issues. Following feedback and discussion of issues relating to hepatitis B at the 2011 Meeting of Viral Hepatitis Clinicians, revision of the discussion paper and a broader release for consultation is proposed, including discussion with the Queensland Ministerial Advisory Committee on HIV/AIDS, Hepatitis C and Sexual Health. 1.2 Context National strategies The Queensland Government through the Australian Health Ministers Conference has committed to the implementation of the following five national strategies: National Hepatitis B Strategy Sixth National HIV Strategy 11

12 Second National Sexually Transmissible Infections Strategy Third National Hepatitis C Strategy Third National Aboriginal and Torres Strait Islander Blood Borne Virus and Sexually Transmissible Infections Strategy. The national strategy implementation plans (one for each of the five national strategies) will be linkage documents specifying stakeholder contributions using broad strategic statements and include reference to relevant state and territory strategies or action plans. No new funds have been provided by the Commonwealth to support the implementation of the National Hepatitis B Strategy In the absence of additional funding for implementation, strategies to reorient existing services and improve the efficiency and effectiveness of existing programs and services are the most likely mechanisms for moving forward. The above strategies are being used by states and territories to guide strategic planning and delivery of services and programs Closing the gap In December 2007, the COAG agreed to six targets for closing the gap between outcomes for Indigenous and non-indigenous Australians. The two health-specific targets are: to close the gap in Indigenous life expectancy within a generation (by 2033) to halve the gap in mortality rates for Indigenous children under five within a decade (2018). In October 2008, the Queensland Government endorsed the policy Making Tracks towards Closing the Gap in Health Outcomes for Indigenous Queensland by 2033 (Making Tracks) which was published in Making Tracks provides the overarching policy directions to guide the Queensland Government s efforts towards closing the health gap by This is supported by an implementation plan aimed to be the first in a series of triennial implementation plans detailing the specific initiatives to be implemented by the Queensland Government within the resources available in the given period Towards Q2: Tomorrow s Queensland The Queensland Government has framed its 2020 vision for Queensland around five ambitions: strong, green, smart, healthy and fair that address these and other future challenges. Queensland Health is the lead agency for two of the targets: shortest public hospital waiting times in Australia cutting by one third the rates of obesity, smoking, heavy drinking and unsafe sun exposure in the community. The current Queensland Health Strategic Plan (QH strategic plan) has identified that in order to meet these targets, substantial changes will be required including a shift in the focus of our priority areas 2. For the last three years the key focus of QH has been to achieve long-term Q2 ambitions and targets, Australian Healthcare Agreement targets and relevant state obligations under the current National Healthcare Agreement. 12

13 1.2.4 Queensland multicultural policy In 2007, QH developed a five year strategic plan, evidence of its commitment to improving the health of people from diverse cultural and linguistic backgrounds under the Queensland Government Multicultural Policy Making A Difference (2005). The Queensland Health Strategic Plan for Multicultural Health includes strategies that together aim to improve the health of multicultural communities and build organisational cultural competency. An implementation plan, which outlines the actions to be taken, is produced annually, as well as an implementation report which details the achievements of the previous year Queensland Health Strategic Plan This plan articulates the strategic priorities for QH 3. This includes a focus on making Queenslanders healthier, meeting healthcare needs safely and sustainably, reducing health service inequities across Queensland and developing our staff and enhancing organisational performance. Key objectives and outcomes in delivering on these strategic priorities are identified. Of particular importance to the activities of this working group are the following objectives and expected outcomes: Support healthy behaviours and lifestyle choices to reduce the population rates of: obesity smoking heavy drinking sun exposure Protect the health of Queenslanders evident by: improving access to and participation rates in cancer screening programs managing preventable environmental health hazards preventing and controlling communicable diseases and maintaining vaccination rates Support an expanded range of services available in a primary care setting evident by: more primary care, ambulatory, rehabilitation and extended care services being provided outside Queensland s public hospitals Provide mothers and babies with the best start evident by: implementing the Maternity and Newborn Services in Queensland Work Plan Improve patient care, safety and patient outcomes evident by: implementing the Patient Safety and Quality Plan Close the gap on health outcomes for Indigenous Queenslanders evident by: reducing the life expectancy gap between Indigenous and non-indigenous Australians for children under five and adults Close the gap in health outcomes for rural and remote Queenslanders evident by: expanding access to a broader range of specialist outreach services available to rural areas Work in partnership to effectively influence health and wellbeing outcomes evident by: improving involvement of internal and external partners in the planning and provision of health services. 13

14 The current QH strategic plan proposes these will be achieved by a range of key strategies including: vaccines for the National Immunisation Program access to services through the use of demand management strategies ongoing implementation of the strategy Making Tracks, provide targeted Indigenous programs in key health areas including mothers and babies, children, adolescent, and the prevention and management of adult chronic disease implementation of health components of the Blueprint for the Bush, a 10 year plan with specific focus on: reviewing funding models to support patients receiving specialist outpatient services locally in their community developing universal service obligations which form the minimum suite of health services for small communities Recruitment of additional medical, nursing and allied health staff including delivering additional nurse practitioner and rural generalist positions. The recently released discussion paper, informing the development of a future QH strategic plan notes the key drivers for change in QH s future operation: national and state health policy agenda s (including national agreements and state strategic initiatives such as Towards Q2:Tomorrow s Queensland and Advancing Health Action consumer demand and community expectation opportunities provided by new technologies patient safety and quality imperatives resource constraints particularly in regards to workforce availability and increasing service delivery costs causes of health burden unacceptable burden of disease amongst some populations such Aboriginal and Torres Strait Islander population, people from low socioeconomic backgrounds and culturally and linguistically diverse communities the impact of population growth on the environment, climate change and shifting patterns of disease Queensland HIV, Hepatitis C and Sexually Transmissible Infections Strategy The purpose of this strategy is to provide direction and a framework that is supported by Queensland Government, non-government organisations (NGOs), private practitioners, research organisations, service providers, community groups and the wider community, and facilitates cooperation among them in order to achieve the three key outcomes below: 1. reduced transmission of HIV, hepatitis C and STIs 2. minimised impact of HIV, hepatitis C and STIs on the Queensland population 3. improved health and wellbeing of people living with HIV, hepatitis C and STIrelated chronic illness. These three key outcomes are to be achieved by focusing on five strategic priority areas: 1. enabling environment 2. education and prevention 3. early detection, care management and treatment 4. training and professional development 5. research and surveillance. 14

15 Implementation of this strategy has been guided through two, three-year implementation action plans. Progress on implementation of the strategy is monitored through an annual reporting process. In 2008, a mid-term review of the strategy was conducted which provided recommendations for action over the remaining three years of the strategy as well as the development of the second three-year implementation action plan. The final independent evaluation of the strategy is being undertaken in Health Protection Strategic Directions The Health Protection Program, CHO is delivered through QH s regional public health units and statewide services including Communicable Diseases Branch, Environmental Health Branch and the Private Health Regulatory Unit. The program also supports program delivery in health service districts and the non-government sector. A strategic priority for the Health Protection Directorate is to lead the development and implementation of statewide BBV and STI action plans, in partnership with stakeholders, including the development of a Viral Hepatitis Prevention and Control Action Plan and the associated Treatment and Management Framework. The consultation phase for development of the action plan and associated treatment and management framework commenced in March 2011 and will highlight key priorities for future action. 15

16 2.0 EPIDEMIOLOGY 2.1 Worldwide It s estimated over two billion people have serological evidence of hepatitis B worldwide, with a resultant 360 million chronic infections. Despite effective vaccines and improving treatments hepatitis B is the 10 th leading cause of death accounting for per cent of primary liver cancers and a million deaths each year 6. The geographical distribution of hepatitis B is widespread and includes high prevalence areas such as the Asia-Pacific region and Africa with an estimated 45 per cent of the world s population living in endemic areas Hepatitis B within Australia Discovered in Australia in , hepatitis B became a notifiable disease the following year, with between 6,000 8,000 cases reported annually 9. It s believed that between 153,000 and 175,000 people are living with chronic hepatitis B representing a prevalence rate of >0.8 per cent, with over 1 million ever infected 10. The rate of new diagnosis and per capita diagnosis ( ) remains stable 1.2 per 100,000 and 31 per 100,000, respectively. During 2009, an estimated 325 deaths were attributed to hepatitis B. It s estimated 25 per cent of those chronically infected will die from the complications of cirrhosis or from hepato-cellular carcinoma (HCC) 11. By 2017, a 2 3 fold increase in hepatitis B caused HCC is anticipated, leading to a marked increase in deaths attributable to hepatitis B. It is of note that as the majority of chronic hepatitis B infections are acquired, overseas risk factors related to notifications of chronic vs. acute hepatitis are very different 12. Hepatitis B was first identified in an Indigenous Australian. Indigenous Australians continue to be at high risk of hepatitis B, which is considered endemic within Aboriginal and Torres Strait Islander communities. Despite composing only 2 per cent of the Australian population, 16 per cent of all cases of hepatitis B are notified within Aboriginal people(s). Death from hepatic cancer has been found to be 12 times more likely within those of Aboriginal decent, compared to those from the general population 13. The 2006 census identified 25 per cent of Australia s population were born overseas, many of whom originate from areas where hepatitis B is endemic. Up to 60 per cent of Australia s chronic hepatitis B has occurred within those who have migrated to Australia from high prevalence countries, in particular between1:3 and 1:5 of those infected are believed to be from North and South East Asia 14. In both Indigenous Australians and those whom have migrated from hepatitis B endemic countries, the vast majority of infections were acquired at birth, or in early childhood 15. Others at high risk of infection include people who inject drugs (PWID) and men who have sex with men (MSM). Nearly 50 per cent of new infections occur in PWID with an estimated 2 per cent of those who inject having chronic hepatitis B, many coinfected with hepatitis C 16. A similar prevalence (2 per cent) is noted within MSM. Whilst it is likely only a small proportion of these men will be co-infected with hepatitis C, they are at greater risk of HIV than PWID given the prevalence of HIV in the gay population. Either co-infection will impact upon disease progression 17. A recent report supported previous estimates 16

17 that 3 per cent of those in custodial settings were living with chronic hepatitis B and identified an additional 17 per cent having markers of previous infection. 2.3 Queensland Little Queensland-specific data is available with demographics limited to age, gender, Indigenous status and HSD. Reported information in relation to CALD communities is limited and only consists of country of birth yet this is unknown for per cent of notifications. Additionally, Aboriginal and Torres Strait Islander status is frequently not reported as it is not recorded on over 50 per cent (66 per cent) of notifications. Testing data, especially that undertaken through private laboratories, is currently not reported and is difficult to obtain. Recent studies from North Queensland revealed that testing is not systemically or effectively performed with <50 per cent of Indigenous clients who participated in an adult health check, having appropriate serological testing including hepatitis B surface antigen (HBsAg), hepatitis B surface antibody (HBsAb) and hepatitis B core antibody (HBcAB). Additionally, the rates of those participating in an adult health check were estimated as low as 22 per cent 18. Queensland notifications data reveals that in 2009 there were 1,068 hepatitis B diagnoses reported of which 1,019 were chronic infections and 49 were acute/newly acquired. Of the newly acquired hepatitis B infections 5 were Indigenous (rate 3:100,000). The remaining 44 were either non-indigenous or Indigenous status was not recorded (rate 1:100,000) i.e. Indigenous (5) accounted for 10.2 per cent of the newly acquired hepatitis B infections, non-indigenous (27) 55.1 per cent and Indigenous status not recorded (17), 34.7 per cent 19. The 2010 data available to date identifies 1,573 reported diagnoses with 55 acute and 1,023 chronic. Further analysis was not available at the time of writing this report. 2.4 Vaccination Since 1988, hepatitis B immunoglobulin (HBIG) has been given at birth to neonates born to HBsAg-positive mothers. In Northern Territory it s been given routinely at birth to Aboriginal and Torres Strait Islander infants (also since 1988) and to all infants since August Hepatitis B vaccination for all adolescents commenced in 1997 with the universal infant hepatitis B vaccination program starting in Hepatitis B immunisation is now recommended as part of the National Immunisation Program Schedule with free vaccine for babies at birth and for further doses at two, four and six months of age. Queensland vaccination snapshot During October to December 2010, the ACIR recorded hepatitis B vaccination coverage of per cent with 14,287 children aged months fully vaccinated against hepatitis B (for age) in Queensland. During the same period 15,063 children aged months were fully vaccinated (for age), which represents hepatitis B vaccination coverage of per cent. Year eight students who have not received a course of hepatitis B vaccinations are offered a catch up program through their school, as part of the School Based Vaccination Program. Queensland Health also provides funded hepatitis B vaccines for the following groups: household contacts of people with acute or chronic hepatitis B susceptible sexual partners of person with acute or chronic hepatitis B 17

18 susceptible people who inject drugs people with hepatitis C or chronic liver disease Aboriginal and Torres Strait Islander people(s) up to the age of 18 years people from countries with high hepatitis B prevalence up to the age of 18 years. In addition, hepatitis B vaccination is recommended for others including MSM, people living with HIV and sex workers 21. These are provided free through QH Sexual Health Clinics. 2.5 Testing Testing for hepatitis B is not routine and as with all testing, should only be undertaken following informed consent. It s however, the first step towards effective treatment and management. Those from populations most at risk are encouraged to undergo testing as earlier treatment can result in improved long-term outcomes. Migrants may believe they have been tested as part of their pre-migration health assessment but this frequently is not the case. 2.6 Natural history Hepatitis B is a common viral pathogen with transmission occurring via contact with blood or other body fluids. Routes of exposure include: percutaneous e.g. through intravenous drug use (IDU), needle-stick, cultural practices, tattooing horizontally through sexual contact with an infected individual or close person to person contact often child to child via cuts or sores vertical transmission (mother to baby). Hepatitis B infection can be divided into both acute and chronic phases with up to 95 per cent of those acquiring hepatitis B eradicating the virus; non-progression is dependent on an effective immune response. The risk of transitioning from an acute to chronic phase is greatly influenced by the age at which the infection is acquired: per cent risk when acquired perinatally 30 per cent risk when acquired during childhood <5 per cent risk when acquired during adulthood. The risk of advanced liver disease is much greater in those acquiring hepatitis B perinatally (20 30 per cent) compared to those acquiring the infection during childhood or adulthood 5 10 per cent and 1 2 per cent, respectively. Four phases can be used to describe acute hepatitis B: incubation period which can last up to 12 weeks symptomatic phase symptoms include jaundice, tiredness, anorexia and dark urine (there will be evidence of raised Alanine Aminotransferase Test (ALT) and HBsAg, 4 10 weeks post exposure) recovery successful immune response and viral eradication, normalisation of ALT clearance hepatitis surface antigen clearance/development of hepatitis surface antibodies. Chronic infection develops if there is a failure to eradicate the virus. In patients with hepatitis B cirrhosis, survival is 70 per cent at 5 years, for those with untreated HCC; survival is rarely over two years. 18

19 Chronic hepatitis B is characterised by four phases as described below, each phase being dependent on the interaction of a number of factors. Phase Characteristics Liver histology Blood picture 1. Immune Minimal damage tolerance 2. Immune clearance 3. Immune control 4. Immune escape Co-existence between host and virus. Viral replication. Active immune response. Inflammation. Viral control suppression of viral replication. High viral replication. Potential for cirrhosis following repeated immune mediated attacks Minimal liver inflammation High risk of progression to advanced liver disease HBeAg+ve, anti-hbe ve ALT normal HBV DNA >20,000 IU/ml HBeAg +ve, anti-hbe +/ ve ALT fluctuating HBV DNA >20,000 IU/ml HBeAg -ve, anti-hbe +ve ALT normal HBV DNA >2,000 IU/ml HBeAg -ve, anti-hbe +ve ALT fluctuating HBV DNA >2,000 IU/ml 2.7 Burden of disease Butler et al (2009) 22 reports that the overall burden of disease attributed to hepatitis in Australia was estimated in Australian Institute of Health and Welfare (AIHW) burden of disease studies (Mathers et al 1999, Begg et al 2007), noting that the disease burden from premature death (YLLs) generated nearly the entire burden of disease (DALYs). Butler proposes that this reflects the serious nature of the long-term sequelae of hepatitis B infection, which are expensive to treat and lead to premature mortality 23. There are both direct and indirect costs associated with the management of a patient with hepatitis B. Direct costs include medical, hospital and allied health and other support services. Indirect costs generally relate to the loss of time for work (productivity) and other activities (e.g. leisure) and are associated with premature death or morbidity. Butler et al (2009) 24 concluded that based on current estimated incidence rate of chronic hepatitis B infection of 55 per 100,000 population, there will be a substantial increase in the number of people living with chronic hepatitis B infection in Australia in the next decade. A large increase in the cases of liver cancer and deaths attributable to hepatitis B is predicted with direct costs under current management and treatment of hepatitis B infection to increase by 80 per cent to $307.9 million in 2017 (using 2008 prices) along with a parallel increase in demand on liver clinics across Australia Future projections Assuming the current vaccination uptake is maintained, it s predicted the number of incident infections has peaked within Australia. However, with future estimations of migration (see chapter 4) this is unlikely to impact the total number of those living with chronic hepatitis B. It is doubtful therefore that the burden of disease associated with hepatitis B will decrease, and with only an estimated 2 per cent of the population currently on treatment, the financial burden will be substantial. 19

20 Projections of the incidence and prevalence of hepatitis B and related liver disease in the Australian population are likely to be influenced by future immigration patterns and the impact of vaccination policies in high prevalence countries

21 3.0 PRIORITY POPULATIONS: CULTURALLY AND LINGUISTICALLY DIVERSE COMMUNITIES Chronic hepatitis B is a major health issue across the CALD population. The majority of people with chronic hepatitis B in Australia are from the Asia-Pacific region, which contributes to two-thirds of all migration to Australia 27. Queensland has a significant CALD population from high hepatitis B prevalent regions, not only from Asian-Pacific region but also from Africa which has increased dramatically in the past 10 years. These population increases indicate an increase in the overall prevalence of chronic hepatitis B infection in the Queensland population. Most people arriving from other countries have not previously been tested for hepatitis B nor are they screened for hepatitis B after arrival. Some refugees who arrived in the past two years have had health assessments including hepatitis B testing through newly established refugee services. There is a range of issues in the CALD population associated with hepatitis B yet to be addressed adequately to prevent the future rising burden of complications of hepatitis B including cirrhosis and hepatocellular carcinoma in Queensland. 3.1 Continued increase in chronic hepatitis B population from diverse backgrounds The latest census (2006) showed 17.9 per cent (699,499) of Queensland s population was born overseas. Of these, 7.9 per cent (308,455) were from non- English speaking countries. About 33.1 per cent (1,292,390) of Queenslanders were either born overseas or had at least one parent who was born overseas 28. There has been an increase in the number of people from overseas settling in Queensland since the 2006 census. In the 2008 calendar year Queensland had a net gain of nearly 50,000 overseas migrants, with overseas migration being the largest component of Queensland s growth since Seven out of 10 top birthplace countries for settler arrivals to Queensland were from the high hepatitis B endemic region Asian-Pacific (excluding New Zealand) 29. The two largest affected communities in the Queensland population are thought to be the Chinese (including those from Hong Kong and Taiwan) and Vietnamese communities. The population in these two communities has been increasing rapidly in recent years, particularly the Chinese community 30,31. Other communities from the Asian-Pacific region in the Queensland population also continue to increase. Several of the top 10 listed birthplace countries of people who settled in Queensland in were countries with high hepatitis B prevalence such as Malaysia (prevalence 6 9 per cent), Philippines (7 9 per cent), India ( per cent), Thailand (8.7 9 per cent) and Fiji (9 11 per cent). In addition to the established communities, some new and emerging communities from the Asian-Pacific region, such as Burmese and South Korean have also increased. An increase in the number of Burmese patients with hepatitis B accessing liver clinics has been noticed in Queensland clinics. Many Burmese people come to Australia as refugees and have not been tested for hepatitis B prior to arrival. The initial diagnosis of chronic hepatitis B soon after arrival has been made after testing provided through the Queensland Refugee Health Services or through GP services. Other arrivals from these countries who are not refugees are also likely not to have been tested for hepatitis B in their countries of origin as health services there have not been available to them. 21

22 In Queensland, as well as growth in population of people born in countries from the Asian-Pacific region there has also been growth in population of people born in African countries. Africa is another high hepatitis B prevalence region. Each year the Humanitarian Program in Australia accepts 13,000 to 14,000 refugees. Between , Australian took a large proportion (79 per cent) of refugees from African countries, and about 5,000 settled in Queensland during the period 32. The Ethnic Communities Council Queensland (ECCQ) has observed a large increase in the number people from African backgrounds with chronic hepatitis B seeking assessment for treatment, especially at the Mater Liver Clinic due to its proximity to the main refugee health service. In addition to refugees, other African populations have been increasing mostly through student and skilled worker visas. Many of these people are accepted as permanent residents in Australia after finishing their study or work. Despite the fact that the Australia government has reduced refugee intake from African countries to 30 per cent in the past two years, the increase of the African population is expected to continue through family reunion and other visa categories including those for skilled workers and students. 3.2 Key issues Unmanaged chronic hepatitis B People who have been diagnosed overseas in earlier years may be not aware of new understandings and developments around hepatitis B. They may still believe in the term healthy carrier and therefore haven t accessed health services for managing and treating chronic hepatitis B. Given the large population from high hepatitis B endemic regions now living in Queensland, it is likely that there are many people with chronic hepatitis B whose condition has not been managed for a long time. People who have been diagnosed recently may have received updated information but may not realise how important it is to manage their condition. Providing culturally appropriate support to people with chronic hepatitis B to enable them to fully understand the disease and better manage their condition is important. Long waiting lists at some liver clinics as well as a lack of updated hepatitis B information among GPs may hamper efforts to improve management of people with chronic hepatitis B Undiagnosed chronic hepatitis B Hepatitis B screening is not a part of the range of medical tests for most temporary and permanent visa entries. People who have been infected with hepatitis B and have never been tested before are unlikely to know their status until after they have been in Australia for many years. Many people falsely believe that they have been tested for all diseases before coming to Australia through the immigration process and therefore believe they don t have any diseases. Only a small proportion of people entering Australia are required to take a hepatitis B test before arrival. These include pregnant women, children who are going to be adopted and people who want to work or study as medical doctors, dentists, nurses and paramedics. From July 2008, newly arrived refugees in Queensland started to receive health assessments within six weeks of arrival. Since then, many refugees have been diagnosed with hepatitis B at the refugee health services. However, only two out of six refugee health services across Queensland provide pathology services and the 22

23 others refer refugees to GPs for blood tests, including the hepatitis B test. It is unclear if all refugees who have been referred to GPs have been tested for hepatitis B. All refugees are offered first dose of hepatitis B vaccine at refugee health services during their health assessments and follow up doses are provided through GP services. Completion rates for vaccination are unknown. Refugees who arrived before July 2008 didn t receive health assessments and therefore their hepatitis B status may be unknown. Due to the asymptomatic nature of chronic hepatitis B, people who were infected at a young age, which is the case for most CALD people with hepatitis B, are most likely not aware of their status until the later stages of disease Lack of hepatitis B knowledge and information The CALD population is very diverse in terms of culture, language, religion, attitudes and understanding about health issues, life experiences, English language skills and education. Different CALD groups have different levels of understanding of hepatitis B but generally levels of knowledge are low. In addition, people from high hepatitis B prevalence countries usually have low English language skills and it is therefore difficult for them to access information. In many languages there are no terms/words related to viral hepatitis as described in English. Many people have never heard of hepatitis let alone hepatitis B, even though it is a common disease in their country. Some are shocked after diagnosis. Language is one of the major barriers for people to understand the disease and to get accurate information. Some people do not have literacy skills in the language of their country of birth. Chinese and Vietnamese are two large ethnic groups in Queensland and their education level in their native language is high. Their knowledge about hepatitis B however is still limited 33. Early testing, vaccination, diagnosis and treatment are critical for people from CALD populations. Using culturally and linguistically appropriate methods to approach people and increase their hepatitis B knowledge should be a high priority. CALD population health can be improved by improving their overall health literature, and by utilising multifaceted strategies to meet the needs of different groups. Appointment notices translated into other languages is a suggested strategy Cultural barriers People from CALD backgrounds have different cultural beliefs and beliefs about health specifically. They have their own views on health, which can be quite different from a western society view. For example, many people believe that healthy means no symptoms and therefore these people don t believe they need to access health services if they don t feel sick. Some people think if they have a disease they will die eventually so they don t need any treatment. People generally want to have a quick fix otherwise they think there is no point seeing doctors regularly. Some people may ignore hepatitis B, and believe it is a very common disease and they don t need to worry. Others are very fearful about the disease. There is a need to identify different cultural beliefs as a prerequisite to working with people on hepatitis B issues. People from some countries don t trust the Australian heath system because of their experiences in their country of birth. It is common in many cultures that a person with a disease is cared for and looked after by the whole family. Sometimes not only immediate family but other relatives also play a vital role in caring for people and participate in decisions about treatment 23

24 and care. Information needs to be given not only to the person with hepatitis B but also their immediate family members and other relatives so that they can take their place in supporting the person with the health issue. Some people may take traditional treatment for illnesses and this may not be communicated to health care workers. Understanding culture and beliefs of various CALD groups is important to achieve better health outcomes for these populations Lack of support Currently, there is limited support available for people with chronic hepatitis B and their families. Because of the language and cultural barriers, stigma, limited social networks, lack of transport, as well as other pressing issues in their life, people with hepatitis B have a great need to access information and support from people they trust. These people may be others who can speak their language or who know their culture and can help them in a practical way such as arranging appointments and accompanying the person to appointments. Giving meaningful information and support to people from CALD backgrounds with hepatitis B is best achieved through support. Supporting people with hepatitis B not only improves health outcomes but also reduces isolation. These people then in turn can become a resource in their communities to disseminate accurate information and to educate others Health priorities For many people from CALD backgrounds health is not regarded as the most important thing in their life, especially for a disease like hepatitis B when often people don t feel unwell. Other issues such as housing, employment, education and transport are higher priorities for most migrants and refugees. This attitude can lead to late testing, diagnoses, treatment and poor self-management A need of culturally responsive services Culturally responsive services are very important to increase access to services for people from the CALD population. Because of language, cultural and other barriers, people from CALD backgrounds may be reluctant, and sometimes fearful about approaching health services. Health services need to be equipped with practical knowledge and skills to deal with a range of issues associated with working with CALD patients. Cultural competency training at organisational, management and individual levels are equally important, which will help to achieve better health outcomes for clients from CALD backgrounds. 3.3 Special groups Overseas students In a total of 269,828 overseas students came to Australia to study 34. Of the top 10 source countries for overseas students, 8 are high hepatitis B prevalence countries including China, South Korea, India, Thailand, Nepal, Malaysia, Vietnam and Indonesia. Although overseas students have health insurance to cover their medical cost during their period of study, they may have restrictions on some testing and treatment. Hepatitis B treatment for overseas students may be limited in the country they intend to return to and this may impact decisions to commence treatment in Australia. If these students have to return to their home country after finishing their study, they may be at risk of discontinuing their treatment in their country of origin or change to another therapy, which may have a negative impact on their liver disease. Overseas students can be granted a bridging visa for one and a half years after finishing their study. During this period some students choose not to purchase health 24

25 insurance in order to save money. This can have a negative impact on hepatitis B management and treatment. Not all overseas students have high level English language skills. Providing interpreters for students can be crucial to ensure understanding of the information they need Visa skilled workers Since 14 September 2009, all 457 Visa holders and their family members are responsible for their health insurance to cover the period of their stay in Australia. Health insurance is a requirement for this visa application. Before 14 September 2009, sponsors were responsible for health insurance though it is uncertain if all sponsors paid subscriptions for their 457 Visa employees and their families. Clinicians need to consider whether commencing treatment whilst in Australia would be beneficial if treatment options are uncertain or unlikely for people living in Australia temporarily under such visa arrangements. A person with 457 Visas return to their home countries after their (4 year) visa expires. 25

26 4.0 ISSUES FOR ABORIGINAL AND TORRES STRAIT ISLANDER PEOPLE(S) IN QUEENSLAND WITH CHRONIC HEPATITIS B INFECTION Nationally, Aboriginal and Torres Strait Islander people(s) comprise approximately 2.5 per cent of the population, but represent 16 per cent of people with chronic hepatitis B 35. Prevalence estimates vary from approximately 2 per cent of urban Indigenous Australian populations to 8 per cent in rural areas, with prevalence thought to be even higher in remote communities 36, 37. There are higher rates of death from liver related causes in the Indigenous population, often linked to hepatitis B 38. The majority of cases of chronic hepatitis B in the Aboriginal and Torres Strait Islander population are believed to have arisen following vertical transmission during pregnancy or at birth, or infection in early childhood, increasing the likelihood of carriage and long term complications 39. Access to care is problematic, and complicated by the demands of acute care and a high level of other chronic diseases (cardiovascular disease, diabetes) that affect the priority given to hepatitis B management at a population and individual level 40. There are many barriers to optimal outcomes for people with chronic hepatitis B. These include community-wide factors (low socio-economic status and disparities in housing, employment and education) 41 and individual co-morbidities, but also a lack of hepatitis B specific education and resources, staffing, population mobility, lack of appropriate care pathways and access to services, including specialist clinics. It would be useful to learn from successful measures implemented in other settings that have similar challenges in service delivery. 4.1 Prevalence rates In Queensland, prevalence rates of chronic hepatitis B in Aboriginal and Torres Strait Islander people(s) are high, especially in the Torres Strait Islander population. The rate in Aboriginal women was documented in as 3.1 per cent (found in 57 of 1866 women tested), and 11.5 per cent in Torres Strait Islander women (66 tested positive of 572) 42. In these groups of women, 24.7 per cent of Aboriginal women and 63.2 per cent of Torres Strait Islander women had serological evidence of past hepatitis B exposure. A 1997 study found 6 per cent of 239 five year old Indigenous children had previous hepatitis B exposure (hepatitis B core antibody positive), and 4 of these 15 children were hepatitis B surface antigen (hepbsag) positive (the mothers of 2 of these children were hepbsag negative (non-infectious) antenatally). Fourteen per cent of the mothers of these children had been infectious during pregnancy (29 of 211 mothers whose previous antenatal serology was available, were positive for hepbsag) 43. Prevalence rates of chronic hepatitis B in the Northern Territory, where universal infant hepatitis B vaccination has been in place since 1990, range from 3.7 per cent of 973 Indigenous women in a recent study of antenatal patients, to 12 per cent (nine of 76) of Indigenous adults in a 2010 study from Arnhem Land 44,45. There has been a reduction in the prevalence of hepatitis B since the introduction of immunisation programs (see below), but there is evidence that rates are still considerably higher than in the general population. Current Queensland notification rates for chronic hepatitis B in Aboriginal and Torres Strait Islander people(s) are approximately 45/100,000 per year, but this may be an underestimate, as Indigenous status is unknown in more than 60 per cent of 26

27 notifications 46. There are approximately 70 new acute or chronic cases of hepatitis B notified in Aboriginal and Torres Strait Islander Queenslanders each year, the majority of these are in the Torres Strait, Cairns and Hinterland region and Townsville region 47. Preliminary findings from a 2011 North Queensland study estimate there are approximately 300 Aboriginal and Torres Strait Islander people(s) diagnosed with chronic hepatitis B and living in the Torres Strait and Northern Peninsula Area of Cape York 48. The 2006 census estimated the Indigenous population of the region as approximately 9000 people 49. There is limited data about rates in Queensland Aboriginal and Torres Strait Islander people(s) of potential consequences of hepatitis B such as cirrhosis or hepatocellular carcinoma. A Queensland study of cancer incidence and mortality in rural and remote communities from found 6 Indigenous women developed liver cancer, compared with an expected incident number of 0.7, and seven Indigenous men developed liver cancer, compared with an expected incident number of In the Northern Territory, in the 1980s, a study of primary hepatocellular carcinoma in Aboriginal people(s) found a relative risk for liver cancer 10 times the non-indigenous population, with the majority of cases associated with chronic carriage of hepatitis B 51, and in , death rates for Aboriginal people(s) from liver cancer were 12 times the rate in the general Australian population 52. Nationally, a 1997 review found 7 times more deaths in Aboriginal and Torres Strait Islander males from chronic liver disease and cirrhosis compared with the national rate, and 13 times more deaths from liver disease than expected in Aboriginal and Torres Strait Islander females History of Queensland response to hepatitis B In Queensland in late 1985, antenatal hepatitis B screening for Aboriginal and Torres Strait Islander women, and hepatitis B immunisation for their babies was introduced 54. In 1987 a catch-up program was added for Indigenous children up to 10 years of age, and then in 1989 Aboriginal and Torres Strait Islander children 19 years and younger were eligible for hepatitis B serology and vaccination if seronegative 55. It has been suggested that in the first years of the catch-up program (perhaps the first decade) many Aboriginal and Torres Strait Islander people(s) were infected despite vaccination: either they missed out on a catch-up program, were vaccinated too late and had already been exposed to the virus, or possibly they received vaccine for which the cold chain had been breached, and was less potent 56. There is evidence of limitations in the coverage of these programs. In 1999, a cluster of hepatitis B cases occurred in teenagers of one Indigenous community in Queensland. A follow up study found only 44 per cent of 235 teenagers who had vaccination status assessed were fully vaccinated, and 47 per cent of the study cohort had not received any hepatitis B vaccine 57. Significantly, over 90 per cent of 132 incompletely vaccinated teenagers had been infected with hepatitis B, and a quarter of these had chronic hepatitis B. Hepatitis B immunisation coverage for Indigenous children has improved, although they often complete the immunisation course later than recommended. In the latest ACIR quarterly report, 85.6 per cent of Queensland Aboriginal and Torres Strait Islander children are up-to-date with immunisations at months, and this number rises to 94 per cent for Aboriginal and Torres Strait Islander children aged months Data quality The Aboriginal and Torres Strait Islander status is not identified in 66 per cent of hepatitis B notifications, and thus Indigenous specific rates are likely to be 27

28 underestimated 59. This is thought due to a number of reasons. A recent questionnaire of viral hepatitis clinic workers found that some respondents did not feel comfortable with asking about Indigenous status 60. There are also anecdotal reports of a failure by the laboratory to transfer Indigenous status into notification data. There are projects underway to improve data quality, essential for service planning Access to care There are general issues for Indigenous Australians about access to health care: Aboriginal and Torres Strait Islander people have low levels of access to, and use of, health services such as Medicare, the Pharmaceutical Benefits Scheme (PBS) and private general practitioners. They face a number of barriers to accessing services including distance from services, lack of transport (particularly in remote areas), financial difficulties and proximity of culturally appropriate services. The relatively low proportion of Indigenous people involved in health-related professions can also affect use of health services 62. Education, language, culture, lifestyle factors and presence of Indigenous staff can all play a role in people s level of comfort accessing services, and therefore affect the care they receive 63. In a 2002 survey, 19 per cent of remote dwelling Indigenous people expressed difficulty understanding or being understood by service providers 64. There is evidence that community-controlled Aboriginal and Torres Strait Islander primary health care services can increase access to treatment, and increase detection and management of chronic disease 65. Indigenous people also attend private general practitioners, reportedly at a rate of 1.1 per cent of total GP consultations likely to be underestimated because of issues with identification, but still low relative to the proportion of the population and relative health status 66. Viral hepatitis clinics in Queensland reportedly see a variable proportion of Indigenous patients, from none to 40 per cent 67. Both under-identification and limited service access for Indigenous patients attending these clinics are relevant factors. In the recent viral hepatitis snapshot survey of 26 QH clinical services, 80 per cent said they had difficulty in recording Indigenous status, and only one site reported having a focus on the needs of Aboriginal and Torres Strait Islander clients 68. Provision of outreach services by viral hepatitis nurses and medical specialists can improve access for Aboriginal and Torres Strait Islander patients. Access to imaging is an issue for many rural and remote patients, therefore affecting the Indigenous population (24 per cent of whom live in remote or very remote locations) 69 to a greater extent than the general population. Similarly the requirement for a liver biopsy prior to eligibility for treatment requires a trip to an urban centre, and is an example of regulation exacerbating the health gap between Indigenous and non-indigenous Australians. 4.5 Management and follow up Primary care Until recently, clinical guidelines for Aboriginal and Torres Strait Islander primary health care in Queensland have not considered the management of chronic hepatitis B. The Queensland Primary Clinical Care Manual first mentions management in its fifth edition in Where guidelines have existed, they have often been inconsistent with what was logistically feasible (e.g. annual ultrasound for patients far removed from imaging services). In response to this situation a paper was published in 2003 to assist remote practitioners in their approach to chronic hepatitis B, practically focussed, and in the context of other health priorities in this population

29 Since that time, advances have been made in the use of antiviral therapy for hepatitis B, but there has been a confusing array of clinical pathways to guide practitioners in their use. Hepatitis B has traditionally been grouped with STIs, and at times, responsibility for follow up of patients with hepatitis B falls between the cracks of general medical care and sexual health teams (where these exist). Hepatitis B serology can be confusing to the uninitiated, and this affects health worker confidence in approaching the disease. Specific health worker education and resources to assist education of patients are essential. There may be a role for specialist training in hepatitis B for Indigenous health workers, especially in areas of high prevalence. Preliminary results from a survey in the Torres Strait show that clients with chronic hepatitis B are generally unclear about how they caught hepatitis B, the problems it may bring and preventive actions they and/or their family may take. The survey also reveals there is limited systematic monitoring of liver function or hepatitis B viral DNA occurring, very limited documentation of education being given, or advice about alcohol and other lifestyle measures, few ultrasounds performed, and few specialist referrals and reviews 72. There is no published data about numbers of close/family contacts of chronic hepatitis B carriers who are followed up, to ensure they are adequately vaccinated Viral hepatitis nurses and clinics The expansion of the role of hepatitis C clinical nurse specialists to become viral hepatitis nurse specialists appears to have assisted raising the profile of hepatitis B to some degree, but there is a need to develop pathways that can merge with current clinic processes to ensure an improvement in all aspects of care for these patients, including clarification of responsibilities for aspects of care. In the recent viral hepatitis snapshot survey a number of services drew attention to being underresourced for delivering care to patients with chronic hepatitis B Specialist clinics The provision of outreach services, where feasible, is a significant step in improving access to care for the Indigenous population. If this can include mobile imaging, then another barrier to quality assessment and care is addressed. Even in urban areas, specialists providing outreach clinics in Aboriginal medical services or other venues closer to the Indigenous population, or perceived as more accessible by patients, can increase attendance and outcomes. It is difficult to determine how many Aboriginal and Torres Strait Islander people(s) are currently prescribed medication for chronic hepatitis B, but all indications suggest that (as in the general population, but possibly to a greater degree) only a fraction of those who would be eligible for such treatment are receiving it. In 2011, there are 11 people in the Torres Strait receiving antiviral therapy for hepatitis B and up to 30 Indigenous people in the top end of the Northern Territory, including from remote communities 74, Education and resources Resources for education of Aboriginal and Torres Strait Islander people(s) with chronic hepatitis B are reportedly limited, 76 yet the need for client (and family) education is evident when 86 per cent of the Torres Strait Islander clients asked, report that they do not know how they contracted hepatitis B and the vast majority report they are unaware of advice on how to keep healthy

30 Health promotion and communication expertise should be utilised in developing appropriate resources to reach this client group. It is also critical that primary health care provider education is developed so that medical officers, nurses and Indigenous health workers are all able to provide accurate information, advice and clinical management to clients with chronic hepatitis B infection. As identified previously, specialist health worker education courses that focus on hepatitis B and C may also be warranted. 4.7 Other factors Perhaps most importantly, co-morbid conditions affect outcomes for Aboriginal and Torres Strait Islander people(s) with chronic hepatitis B. Obesity can impact on liver health, and in a national survey of Aboriginal and Torres Strait Islander people(s), of those aged 15 years and over, 29 per cent were overweight and 31 per cent were obese 78. Alcohol use is another factor affecting prognosis in chronic hepatitis B. The Aboriginal and Torres Strait Islander people(s) are less likely to drink alcohol than non-indigenous Australians, but of those who drink, proportionally more Indigenous Australians drink at risky or high-risk levels 79. In the small survey recently conducted in the Torres Strait, 50 per cent of 42 clients with chronic hepatitis B did not drink alcohol, but more than 90 per cent of those who did drink alcohol, usually drank at harmful levels every drinking day 80. There are difficulties for any population with implementing lifestyle change, no less in the Indigenous population, and possibly more so because of poverty, over-crowded housing, location (and access to affordable fresh food), and historical factors that have disrupted a functioning society. There remain unanswered questions in relation to chronic hepatitis B in the Aboriginal and Torres Strait Islander population. How widely are people being screened for hepatitis B? How many cases of chronic hepatitis B are undiagnosed? How effective is monitoring and follow up for people already diagnosed with chronic hepatitis B? How many Aboriginal and Torres Strait Islander people(s) receive treatment? How many would benefit from treatment, but aren t receiving it? What understandings/cultural beliefs (if any) affect the patient s response to chronic hepatitis B, acceptability of liver biopsy and/or treatment? What practices have been implemented in Queensland and elsewhere that improve care delivery to this population, and can these be shared for adaptation in other places? What do Aboriginal and Torres Strait Islander people(s) know, and want to know about chronic hepatitis B? In summary, a suite of measures are needed to reduce the impact of chronic hepatitis B on the Aboriginal and Torres Strait Islander population and these should include: ongoing improvements in prevention; maximising coverage of childhood immunisations development of Indigenous-specific (staff and patient) education and resources development of strategies to address co-morbid conditions e.g. heavy alcohol use and obesity improve clinical pathways to guide monitoring, relevant investigations and management, and apply a chronic disease model approach 30

31 improve Indigenous identification on pathology requests and surveillance notifications include hepatitis B immune status testing at least once in adulthood as part of an adult health check improve access to culturally competent care including outreach specialist services and consider ways to increase treatment delivery and support in different settings develop a strategy to better enumerate the cohort of Indigenous Australians with chronic hepatitis B, for service planning and to monitor outcomes. 31

32 5.0 IMMUNISATION AND CHILDHOOD INFECTION MANAGEMENT: ANTENATAL, POSTNATAL, PERINATAL AND CHILDHOOD CONSIDERATIONS The progression course of hepatitis B may be extremely variable depending on the patient s age at infection and immune status, and the stage at which the disease is recognised. More than 95 per cent of immunocompetent adults will clear the virus and have lifelong immunity. For infants who acquire the infection at birth, the risk of chronic infection is 80 to 90 per cent, and for those who acquire the infection between the ages of 1 and 5 years, the risk of chronic infection is per cent 81. There are several relevant documents and guidelines for care which are discussed below. 5.1 Immunisation in Queensland At risk infants: have been immunised in Queensland since Infants: universal infant dosing began in Queensland in Adolescent: hepatitis B immunisation began in 1998 (young people over the age of 12 are more likely to be unvaccinated). 5.2 Current immunisation and management best practice principles The childhood immunisation schedule is set out in the National Immunisation Program in Queensland (NHMRC) Australian Immunisation Handbook 9 th Edition 82 and gives clear guidelines for the management of hepatitis B immunisation. Hepatitis B immunisation schedules are referred to in the Queensland Health Primary Clinical Care Manual 2009, and follow the guidelines of the NHMRC Australian Immunisation Handbook. Local hospital guidelines give direction for the management of the infant, but little direction for the management of the mother (or her family and partner). The Queensland Health Primary Clinical Care Manual (PCCM) suggests yearly liver function (LFT) monitoring which is consistent with Gastroenterological Society of Australia (GESA) recommendations 83, however it is less monitoring than suggested by American Association for the Studies of Liver Diseases (AASLD), the Australasian Society for HIV Medicine (ASHM) and the Cancer Council who offer algorithms between three and six monthly dependent on various criteria 84. A dedicated Queensland Health corporate Maternity Unit was established in August 2007 as part of the government's response to Re-Birthing Report of the Review of Maternity Services in Queensland 2005 by Independent Reviewer Cherrell Hirst. Queensland Health clinicians follow the RANZCOG statement C-Gen 3 Hepatitis B (which includes guidance for management of the mother and the baby) and the National Midwifery Guidelines for Consultation and Referral 85 by the Australian College of Midwives Inc which includes a direction for consultation for hepatitis b positive mothers. The Queensland Health statewide pregnancy health record includes antenatal screening and birth recommendations. The maternity (vaginal birth and caesarean section) and neonatal clinical pathways refer to immunisation prompts 85. They do not specifically mention hepatitis B management or referral for antenatal and postnatal women Current generally accepted best practice at birth The 2008 Chronic Hepatitis B (CHB) Recommendations, by the Gastroenterological Society of Australia (GESA) 86 advise all pregnant women should be screened for hepatitis B surface antigen, even if previously tested or vaccinated. GESA recommends that infants whose mothers are hepatitis B surface antigen positive be 32

33 given hepatitis B immunoglobulin within 12 hours of birth. Hepatitis B vaccine (1st dose) is offered for all infants and should not be delayed beyond seven days after birth, unless contraindicated (the Queensland Health Hepatitis B consent form is used). For infants of hepatitis B positive women the first dose should be given at the same time as the hepatitis B immunoglobulin or within 24 hours of birth Queensland Health Immunisation Program The Queensland Health Immunisation Program (QHIP) implements the National Immunisation Program in Queensland. The National Immunisation Program is a joint Australian State and Territory Government initiative aimed at controlling the incidence of vaccine preventable diseases in the community through improving vaccination coverage to recommended National Health and Medical Research Council (NHMRC) levels. Immunisation against hepatitis B is recommended as part of the National Immunisation Program Schedule (NIPS) and the vaccine is available free for: babies at birth, with further doses at two, four and six months of age year eight students in Queensland who have not already received a course of hepatitis B vaccinations. Aboriginal and Torres Strait Islander children require additional hepatitis A and pneumococcal vaccinations as part of the NIPS. The hepatitis B vaccine for children is given as one injection combined with other childhood vaccines. For adolescents who have not received hepatitis B immunisation, the National Health and Medical Research Council (NHMRC) recommends two doses of hepatitis B vaccine, given four to six months apart. In Queensland, year eight students are offered immunisation through their school as part of the School Based Vaccination Program. No booster doses are required. See the Queensland Health Immunisation website for more information on the School Based Vaccination Program. Queensland Health also provides funded hepatitis B vaccines for the following groups: household contacts of people with acute or chronic hepatitis B susceptible sexual partners of person with acute or chronic hepatitis B susceptible people who inject drugs people with hepatitis C or chronic liver disease Aboriginal and Torres Strait Islander people(s) up to the age of 18 years people from countries with high hepatitis B prevalence up to the age of 18 years Australian Childhood Immunisation Register (ACIR) The ACIR is a national register administered by Medicare Australia that records details of vaccinations given to children under seven years of age who live in Australia Vaccination information and vaccination administration system (VIVAS) Since 1996, immunisation data in Queensland has been recorded by QH s VIVAS. VIVAS is a register of vaccination events for all childhood vaccines given in Queensland through the free NIPS and is an automated vaccine distribution system. The system is designed to: provide doctors with an immunisation history of their child patients 33

34 send reminder lists to service providers of children who may be unvaccinated or overdue for vaccination monitor the number, type and expiry date of vaccines. This allows Queensland Health to quickly follow-up with doctors and health providers if a vaccine batch is found to be faulty, and to identify providers holding stock that is expected to expire before use remind health providers of the vaccination status of Indigenous children, adolescents and adults due for influenza and pneumococcal immunisations assist QH to respond to outbreaks of vaccine preventable diseases assist in monitoring and evaluating the effectiveness of immunisation programs. Some immunisation rates are calculated from VIVAS which are used in projects to encourage vaccination where it is most needed. These statistical reports do not contain identifying information. 5.3 The management of perinatal infections The Management of Perinatal Infections 2002, 89 (Australasian Society for Infectious Diseases) provides algorithms for the management of hepatitis B, and mentions management of the mother as well as the infant, contact tracing, and ongoing management. Algorithms are provided for the following situations and are provided in Appendix 5: antenatal diagnosis of Hepatitis B which includes referral and contact tracing management of hepatitis B in pregnancy a pathway for acute and chronic management hepatitis B exposure during pregnancy management of infants of mothers with Hepatitis B. 5.4 Chronic hepatitis B (CHB) recommendations, 2010 the Gastroenterological Society of Australia (GESA) 90 The GESA recommendations include treatment options for children and young adults. GESA state that women with CHB generally do well during pregnancy providing they have not progressed to decompensated cirrhosis. The recommendations give guidance to: antenatal treatment considerations (generally they caution against treatment during pregnancy) modes of delivery management of infants management of pregnant women with high viral loads breastfeeding. 5.5 Antenatal testing and blood-borne viruses (BBVs), 2011 Australasian Society for HIV Medicine (ASHM) 91 Antenatal Testing and BBVs by ASHM is a national resource containing advice for antenatal testing, and information about management of BBVs during pregnancy and at delivery, and recommends all women infected with hepatitis B during pregnancy should have specialist referral. The resource also advises that it is the responsibility of the health care professional to follow up sexual and household contacts. Topics covered in the resource include mother to child transmission; the effect of hepatitis B on pregnancy; the effect of pregnancy on hepatitis B, interventions during pregnancy, delivery and postpartum. 34

35 5.6 Paediatric gastroenterology services in QueenslandRoyal Children s Hospital (RCH): Queensland Paediatric Gastroenterology, Hepatology and Nutrition Service. This service features: tertiary level inpatient services at RCH consultative inpatient service at Mater Children s Hospital (MCH) specialist referred only outpatient service at RCH and MCH comprehensive diagnostic and therapeutic endoscopy services paediatric motility services including ph, impedance and manometry (oesophageal, antroduondenal, anorectal and colonic) studies breath hydrogen testing tele/video conferencing for regional centres management of children with liver disease including transplantation, in conjunction with the Queensland Liver Transplant Service The Centre for Evidence Based Paediatric Gastroenterology and Nutrition (CEBPGAN) This is a unique resource for clinicians involved in the areas of paediatric gastroenterology and nutrition, including both paediatric gastroenterologists and dieticians, and has Queensland based members

36 6.0 PERSPECTIVE OF A PERSON LIVING WITH CHRONIC HEPATITIS B 6.1 Personal perspective I was diagnosed with chronic hepatitis B (CHB) 26 years ago and have called Queensland home for the last 18 years. Knowing that currently only about 2% of people with CHB in Australia receive antiviral treatment, I consider myself very lucky to belong to this privileged group. The following are my experiences of how this came to be, some entirely satisfactory and others with room for improvement. These experiences also led to a desire to research hepatitis B-related issues and a brief overview of results of a first study is provided at the end. My future studies will focus on the barriers that keep people from an identified risk group from receiving appropriate care for CHB, and how GP involvement could be improved. Yvonne Drazic. Positive experiences BEFORE referral to a specialist liver clinic: My children were automatically vaccinated at birth (1994/96). I found a hugely helpful online support group for people with hepatitis B ( based) which prompted me to request the necessary blood tests and taught me what to ask for (HB-list.org). They offer warm peer support, answer any questions, and provide the latest findings in clinical research and other related news. A GP I knew was willing to listen and order the tests I asked for although his knowledge of hepatitis B was limited. Positive experiences AFTER referral to a specialist liver clinic: Once I got to see a liver specialist in 2005, things happened quickly: liver biopsy, treatment, regular monitoring. Excellent clinical care ever since (I can tell because I kept checking with the HB-list). I am allowed to actively participate in treatment decisions which I greatly appreciate. At some stage, I came across Hepatitis Queensland who were extremely friendly and helpful, and through my research activities I met some great people working in the hepatitis field (locally and interstate). Things that could be improved BEFORE referral to a specialist liver clinic: More GP involvement! This is at the top of my wish list because many people are unaware of their infection (or the risk of becoming infected) and, therefore, opportunities for prevention and early detection are missed. Also, there is usually a long gap between a positive diagnosis and the point when referral to a specialist becomes necessary. Without regular monitoring it is difficult to chart the disease stages which differ in every individual (e.g. changes from one immune phase to the next). This can result in ongoing liver damage which is symptom-free. GPs should therefore suggest immunization, screening and monitoring to people at risk, and provide information (if only about where to get information). In addition, the practice could send check-up reminders. Hepatitis B in Queensland: A situation analysis 36

37 The previous point, of course, requires GPs to be sufficiently educated about hepatitis B, or at least to use the excellent resources that are available such as B Positive All you wanted to know about hepatitis B or the website (which is also great for patients). Without this basic knowledge, some GPs will not know what tests to order. For example, I went with elevated ALT/AST for years (occasional tests) before having my first viral load test which I requested myself. Generally, I would like to see more printed hepatitis B resources displayed in all health care settings, pharmacies etc. For example, the brochure wall at the liver clinic does not contain any resources about hepatitis B although they exist (even translated in 19 languages, available from the Hepatitis Queensland website). Thanks to the HB-list, I did not need any psycho-social support but this may be different for other people. Although post-diagnosis counselling is recommended (e.g. on the hepbhelp website), I suspect it is very rarely offered. Once a referral is made, the wait to see the specialist is too long. Things that could be improved AFTER referral to a specialist liver clinic: The prospect of having to undergo a liver biopsy can be scary and may prevent people from attending their appointment which then causes more possibly harmful delays. There is need for additional and/or more detailed information at this stage which is not usually offered freely. My questions were always answered, but some people may not know how to ask. Some emotional support can make a difference (e.g. after being told one has cirrhosis). I understand that the residential psychologist is only funded to see hepatitis C patients but a simple thing such as some contact details of relevant services would help. The fact that there is a lot of information about chronic hepatitis C (CHC) but not CHB makes people feel left out. You think, what about me? This is not aimed at me so I m probably not supposed to read it. It could be mentioned that some of this information also applies for CHB (e.g. about nutrition, lifestyle etc). 6.2 Research findings Factors influencing the health-related quality of life of people with chronic hepatitis B and C, Yvonne Drazic, James Cook University, Cairns, Queensland, First of all, it was much more difficult to find participants with CHB than with CHC, suggesting that many people with CHB simply do not know that online resources such as the Hepatitis Queensland website (through which the study was mainly advertised) exist. Therefore, the CHB sample is not representative of all people with CHB in Australia (e.g. Aboriginal Australians were not well represented). Those who did take part still reported lower satisfaction with received information and care than those with CHC. On average, the CHB group reported similarly low levels of health-related quality of life (HRQoL) as the CHC group despite lower perceived stigma. This Hepatitis B in Queensland: A situation analysis 37

38 is surprising because in a US study which used the same measure of HRQoL, people with CHB scored close to a healthy control group whereas people with CHC scored lower. Overall, people in the high stigma group reported lower HRQoL than those in the low stigma group but the difference was smaller in the CHB group, suggesting that stigma is a lesser problem in CHB than in CHC. However, it does affect many people on the HB-list and is likely to be more pronounced in Aboriginal and CALD communities. Therefore, a special effort is necessary to keep hepatitis B-related stigma as low as possible. To wrap this up, my story overall is quite a happy one with things eventually falling into place. My viral load is down to an all-time low and all my numbers are in normal range. Wouldn t it be nice to make such positive outcomes the rule rather than the exception? Hepatitis B in Queensland: A situation analysis 38

39 7.0 SERVICE PROVISION IN QUEENSLAND 7.1 Queensland Health services snapshot The Communicable Diseases Branch recently conducted two surveys of clinical services including public hospital outpatient liver clinics, sexual health services, haemophilia treatment centre, liver transplant services and offender health services. The purpose of the surveys was to assist in service planning and to identify current activities and possible gaps across services in Queensland. The first HIV/AIDS, hepatitis C and sexual health services survey conducted from November 2010 through to January 2011 involved all QH funded programs and service providers. The survey aimed to determine the size and make-up of the state s service providers as well as their contributions to the implementation of the Queensland HIV, Hepatitis C and Sexually Transmissible Infection Strategy (the Strategy). The second survey focused more specifically on viral hepatitis with the purpose of recording a snapshot of current activities regarding hepatitis B and C in QH clinical services, with a view to documenting current service delivery and to identify possible gaps. The following is a summary of key findings collated through the two surveys: Location of services Eleven of the 15 sexual health clinics that responded to the 2010/2011 HAHCSH services survey are located in community health facilities with a further three located in a tertiary hospital facility. Almost all viral hepatitis clinics are located within hospitals however two also list their services as operating from within correctional centres. In addition to those services indicated in the two survey s there vast range of services and service providers involved in activities supporting the diagnosis, vaccination, management and care of people in the community. A more detailed list of services is provided in Appendix Geographical reach of services The majority of sexual health services (73 per cent) provide their services across a single HSD with the bulk of these operating from just one site. A further 20 per cent operate across multiple HSDs. Only one clinical service operates statewide. Viral hepatitis services operate an array of models including offering statewide services from one or multiple sites, whilst others provide services across a single HSD or multiple HSDs Service populations In line with their generalist role, all sexual health clinics report that they all offer services to all targeted populations identified in the HIV, Hepatitis C and Sexually Transmissible Infections Strategy Figure 1 provides a summary of the range of targeted populations they direct their services to 86 per cent regard young people as a major focus of their work whilst 73 per cent regard people living with HIV as a major focus, and 60 per cent regard men who have sex with men and Indigenous people as a major focus. Only 20 per cent consider people from CALD communities to be a major focus of their service delivery. Hepatitis B in Queensland: A situation analysis 39

40 Sexual Health Clinic Service Focus Young people People with HIV Indigenous Men who sex with Men People who inject drugs LGBT Sex Workers People with Chronic Hepatitis Custodial Settings People from CALD Backgrounds % of clinics Figure 1: Client groups reported as a major focus of activity within sexual health clinics. Viral hepatitis clinics do not identify with the Strategy target groups as strongly, although most recognise all nominated target groups amongst their clients. This may be due to their being predominantly located within hospitals, and their broader focus on gastroenterology. Less than half consider people with chronic viral hepatitis a major priority and only 28 per cent regard people who inject drugs and people from CALD communities as a major focus of their work Service activities Viral hepatitis specific clinical services (e.g. outpatient clinics) reported seeing their roles predominantly as clinical service providers and are less likely to be involved in delivery of other aspects of the Strategy. No services reported that they see their role as supporting local planning to implement the HAHCSH Strategy. Only one service reports working collaboratively with other agencies to improve local health outcomes, although most report that they provide culturally appropriate services. The vast majority of respondents to the Snapshot of Viral Hepatitis Survey reported using interpreter services however approximately half of these services only required an interpreter for less than five per cent of their patients. Barriers to using interpreter services included availability, confidentiality, quality and cost. Sites did not report supporting local NGOs in education and prevention programs, providing health promotion or harm minimisation resources, conducting general awareness campaigns or providing education to schools. Services did provide education to target populations as part of standard service delivery, however only one site identified that it develops strategies to respond to emerging trends. Only one site reported providing Indigenous specific services. Most clinics identify provision of treatment and care services with most services reporting that they provide informed consent for tests and a confidential service as shown in Figure 2. Seventy per cent report that they participate in service audits and offer services that are consistent with national and state best practice. Fifty seven per Hepatitis B in Queensland: A situation analysis 40

41 cent report that they provide access to shared care programs, and regularly update their service guidelines. Viral Hepatitis Clinic Treatment Activities Informed consent for all tests Confidential and anti-discriminatory approach Participation in service audits Approach consistent with national standards Provide services in line with Qld best practice Improve access to shared care services Update guidelines and HMPs Benchmark service delivery Reduce barriers to testing Early detection screening for at risk pop % of clinics Figure 2. Reported activity of viral hepatitis clinics in delivery of treatment and care related activity. Only one site reports that it supports early detection programs for at risk populations, or is investigating ways to reduce barriers to testing and waiting times at clinics. No sites identify service planning for CALD populations or specialist programs for Indigenous populations. The offender health service response indicated a much stronger focus on improving the overall quality of services for prison populations with a focus on advocacy, and collaboration with other service providers. Viral hepatitis clinics are less likely to have capacity to support local training with only 57 per cent reporting that they offer on the job mentoring and clinical placements and 28 per cent reporting that they participate in local interagency forums. Only one site provides support to Indigenous health care workers. Sexual health clinics perform a much broader role in their local areas than merely providing clinical services. In almost all but the very smallest sites they take active roles in almost all areas of delivering on most of Strategy s objectives. For instance 87 per cent of respondents identified they have a role in strengthening links with agencies and 80 per cent report promoting inclusive structures such as supporting local community based programs for affected communities and raising awareness of their rights. Clinical activity Thirty-seven per cent of the 19 services responding to the snapshot survey recorded contact tracing (partner notification) as a component of their service delivery. Sixty-seven per cent of responding services also reported that they currently monitored hepatitis B patients who were not on drug therapy. The total number of patients reportedly being monitored was Responses ranged from one to 300 with a median of 12 patients. Approximately half the services recorded patients on drug therapy treatment, with a total of 574 patients reported on treatment. Responses ranged from The length of time patients were reported on treatment for hepatitis B included: <1 year: Total 110, Range 0 60, Median year: Total 177, Range 0 90, Median 37 >2 year: Total 107, Range 0 70, Median 5. Hepatitis B in Queensland: A situation analysis 41

42 Half the services reported that less than 10 per cent of hepatitis B patients were on pegylated interferon. The majority of services reported using nucleoside/tides for treatment. Sixty-eight per cent of services responding (n=14) reported 100 per cent compliance with treatment with only 0.5 per cent of services indicating patients as either struggling or stopped. Care arrangements were most commonly reported as a Gastroenterology and/or Hepatology Specialist with nurse support ranging from 10 per cent (Gold Coast) to 100 per cent (Princess Alexandra Hospital (PAH), Mackay). Services least reported referral to a private specialist, offender health or an Aboriginal healthcare provider, ranging from 0 to 10 per cent. Quality activities Fifty-three per cent of total respondents reported that regular clinical chart audits were conducted. Of those who reported conducting chart audits (n=10), the following frequency applied. monthly 10 per cent 3 monthly 30 per cent 6 monthly 40 per cent annually 20 per cent. Forty-seven per cent of the total respondents conducting chart audits reported the outcomes of the clinical chart audits to the following: quality improvement at community health themselves 1st audit of clinics this year reported to the Department of Gastroenterologists clinical nurse consultant team clinic director of nursing QL process (sic) senior medical officer One respondent commented, Our service has in place a register of all the chronic hep B and C clients but currently do not actively monitor and follow-up chronic hepatitis B & C clients Current staffing levels There are a total of 67 full time equivalent (FTE) staff employed in viral hepatitis related clinical services (e.g. gastroenterology/hepatology clinics) across Queensland almost all of whom are in permanent positions. The complement includes 37 medical officers, 17 nurse officers, 8 administration officers and a small number of others including nutritionists and psychologists. As at January 2011, there are currently no vacant positions. Despite increases in staffing levels across 10 public hospital outpatient clinics through the Hepatitis C Shared Care Initiative, there remains a disproportionate demand on services in some parts of the state. Hepatitis B in Queensland: A situation analysis 42

43 Current staffing numbers for these services do not appear to adequately support service delivery. There is a particular need for additional medical, nursing and administrative staff at the PAH, RBWH and Nambour Hospital where current waiting times for patients in all categories are significantly longer than other public hospitals. Other hospitals require greater access to a specialist gastroenterologist/hepatologist to facilitate the assessment process and reduce waiting times (e.g. Mackay Base Hospital). Benchmarking for adequate resourcing of the outpatient liver clinics in Queensland public hospitals has been proposed as a course of action in response to the recommendations of the Evaluation of the Queensland Health Hepatitis C Shared Care Initiative In sexual health clinics, the pool of 157 FTE staff includes 22 medical officers, 61 nurse officers, 25 healthcare workers, 23 administration staff, 7 psychologists and a range of others including contact tracing officers, pharmacists, and information technology support staff. Almost all positions are permanent with a total of only 6.5 FTE employed on a temporary basis. Sexual health services are experiencing an approximate vacancy rate of 6 per cent with over 9 positions vacant as at November Data bases and systems current status and perceived gaps Services reported using the following data bases to support service delivery and planning. Spreadsheet or Table HBCIS Handwritten SHIP Practix Ferret 77% 52% 29% 23% 12% 6% Table 1. Databases/systems supporting clinical services A number of services (n=6) reported having not received any formal training in the use of the data systems. Reasons for not receiving formal training included: learning on the job as we do not have a full time administration officer and QH no longer supports the Sexual Health Information Program (SHIP) as a new program is in development. The following data system gaps were identified by services: waiting for rollout of the Public Health Information and Clinical Services Solution (PHICSS) linking of results from Auscare to FERRET SHIP very difficult to get accurate reports from current system not designed to record occasions of service adequately or does not record enough information lack of funding or personnel to support database manager, nurses, administration officers, medical staff to complete data entry enhanced surveillance for priority populations staff don t always tick the correct data fields for reporting later current system cannot generate suitable report. Hepatitis B in Queensland: A situation analysis 43

44 7.2 Patient resources Services reported using the following patient resources most frequently. For more information on patient resources available refer to Appendix 2. Queensland Health ATODS resources Alcohol quantity guides Hepatitis Queensland Fact Sheets HEP C & Hep B Little Book of Facts Hepatitis Australia Booklets Queensland Injectors Health Network Safer Injecting information Haemophilia Foundation Queensland Range of publications Queensland Aboriginal and Islander Health Council Aboriginal and Torres Strait Islander BBV Pamphlet ASHM Multilingual resources Pharma resources Pegysus packs and info books Hep B & You Indigenous Hepatitis B Pamphlet Pegatron MSD Table 2. Patient resources used most frequently by clinical services Services reported the following as gaps in current resources: Aboriginal and Torres Strait Islander resources multilingual resources low literacy flip charts hepatitis B basic fact sheet on education and preparing for treatment food, diet and coping during treatment strategies on sleep, commitment, continuing over the hump after treatment what the patient can expect. 7.3 Issues Long-term outcomes of chronic infection For both hepatitis B and hepatitis C the long-term outcomes of chronic infection can include progression to cirrhosis, development of hepatocellular carcinoma (liver cancer), or liver failure. In 2008, chronic hepatitis B infection and chronic hepatitis C infection were the underlying causes of liver disease in 1.9 per cent and 27.7 per cent of liver transplants, respectively in Australia Co-infection HIV, hepatitis C or hepatitis B co-infection: Both hepatitis B and hepatitis C are more common in people with HIV than in the general population because of shared risk factors for viral transmission. HIV shares major routes of transmission with both hepatitis C and hepatitis B. Six per cent of services (total services=18) indicated that hepatitis B and HIV co-infection occurred in more than 20 per cent of patients, where 56 per cent reported hepatitis B/HIV co-infection in less than 5 per cent of patients. Hepatitis B in Queensland: A situation analysis 44

45 Sexual transmission is responsible for the majority of the cases of HIVhepatitis B co-infections. Hepatitis B and hepatitis C co-infection co-infection is usually associated with a more severe liver disease, an increased risk of progression to cirrhosis and a higher incidence of HCC. A 2006 study showed that co-infection was associated with much higher mortality rates: Four to six per cent of people with hepatitis B positive antigens are estimated to be co-infected with hepatitis C. The majority of QH clinical services reported co-infection of hepatitis B and hepatitis C. Seventy-two per cent reported that co-infection of hepatitis B/hepatitis C was reported in less than 5 per cent of patients with a further 6 per cent reporting co-infection of 5 10 per cent. Other co-morbidities thirty-nine per cent of services (total services responding=20) reported other co-morbidities amongst patients including: diabetes (mostly reported) mental health haemophilia alcoholic liver disease infections arising from treatment side-effects arthritis. One service recently surveyed reported that up to 20 per cent of hepatitis B patients attending their service experienced mental health problems Benefits of early detection, management and treatment of hepatitis B The primary goal of therapy is control of viral replication to prevent disease progression and minimise the risk of liver failure or development of liver cancer. Hepatitis B infection is a more complex disease to manage than hepatitis C. Treatment is usually lifelong and individualised. Regular monitoring is required to identify drug resistance, hepatitis flares and treatment response. The decision to commence a patient on antiviral therapy is based upon a number of factors including age and status of disease progression. Liver biopsy is a compulsory requirement if seeking public hospital access to therapy. It is estimated that only 2 per cent of people with chronic hepatitis B, and very few Aboriginal and Torres Strait Islander people(s) receive any clinical management for their infection. Factors contributing to low levels of treatment uptake include: poor understanding of hepatitis B within communities most at risk of chronic infection and by primary care practitioners asymptomatic infection invasive procedures to secure government funded treatment concerns about antiviral drug resistance toxicity of interfon-based therapy limited infrastructure supporting treatment particularly in rural and remote areas Evidenced-based clinical practice guidelines and management protocols Treatment options are evolving. There is a need for establishment of nationally agreed evidenced based clinical practice guidelines and management protocols for delivering optimal treatment, monitoring and management including guiding both general practitioners and specialists with low caseloads. Hepatitis B in Queensland: A situation analysis 45

46 The following local, national and international documents have been developed in recent years and currently guide a variety of health practitioners and services in the health sector: Queensland Health Queensland Sexual Health Clinical Management Guidelines (2010) Queensland Health Primary Clinical Care Manual (2009) (Updated 2010) Queensland Health Communicable Diseases Control Manual (2008) (Under revision) The Australian Immunisation Handbook 9 th Edition 2008 Australian and New Zealand Digestive Health Foundation, Gastroenterology Society of Australia, Recommendations for Chronic Hepatitis B (CHB) (2009/2010). Australasian Society for Infectious Diseases, Management of Perinatal Infections (2007) Australasian Society for HIV Medicine All you need to know about hepatitis B A Guide for Primary Care Providers(2008) European Association for the Study of the Liver, EASL Clinical Practice Guidelines: Management of cholestatic liver diseases (2009) US Centres for Disease Control, Recommendations for Identification and Public Health Management of Persons with Chronic Hepatitis B Virus Infection (2008) American Association for the Study of Liver Diseases Practice Guidelines for Management of Chronic Hepatitis B (Updated 2009) For more information on current clinical guidelines refer to Appendix 3. Seventy-four per cent of respondents to the recent Viral Hepatitis Snapshot Survey reported using protocols or algorithms for patient treatment/management. However the total number of services responding was 19 of the 26 services. Respondents reported using a range of patient assessment tools including tools developed in house to guidelines such as those provided through: Australian and New Zealand Digestive Health Foundation Chronic Hepatitis B Guidelines Clinical Practice Guidelines: Management of chronic hepatitis B European Association for the Study of the Liver (EASL) American Association for the Study of Liver Diseases (AASLD) Practice Guidelines for Management of Chronic Hepatitis B. Of those who responded (n=18) only 39 per cent reported using standard patient referral guidelines. Sixty-one per cent reported not using standard referral guidelines Limited access to services in geographical areas of high demand The waiting times at a public hospital liver clinic for assessment to commence treatment vary across the public hospital services ranging from no wait to in excess of four years. Waiting times for assessment for category 1 patients with hepatitis B currently range from five to 126 days. The recommended wait is less than 30 days. Waiting times for assessment for category 2 patients range from 28 to 600 days. Median 219 days. The desirable wait is within 90 days. Waiting times for assessment for category 3 patients range from 56 to 867 days. Median 365 days. Hepatitis B in Queensland: A situation analysis 46

47 Hepatitis B can impact on Category two waiting times due to the significant morbidity associated with late presentation. Late presentation is often seen in populations such as Aboriginal and Torres Strait Islander, and people from Asia and Africa Number and acuity of referrals New referrals to public hospital liver clinics for assessment of people with hepatitis B range from one to 30 referrals per month. The larger hospital facilities in Southeast Queensland (e.g. PAH, RBWH, Nambour Hospital) generally receive the greater number of monthly referrals. The volume of referrals where there is significant acuity (i.e. where patients fall into category one or category two advanced liver disease) impacts on the capacity of the service to respond. This is particularly the case for PAH, RBWH and Nambour Hospital and to a lesser extent other hospitals in Queensland. Patients with advanced stage liver disease are generally managed by a specialist in the public hospital system or in private practice. Costs of treatment are prohibitive for the majority of those affected Other limiting factors for access to treatment It is currently QH policy to offer a second appointment to patients who do not attend their initial appointment. It appears, in some sites that continued failure of patients to attend their first and subsequent appointments is reducing the availability of appointments for new cases to be assessed. A systematic review of practices by HSD to minimise failure to attend may be required. Of those services which recorded failure to attend (57 per cent), failure to attend ranged from 1 50 per cent with a median of 20 per cent. West Moreton Sexual Health Services recorded the highest failure to attend at 50 per cent. Cancellation rates ranged from 0 25 per cent with PAH outpatient liver clinic reporting a 25 per cent cancellation rate. Thirty-two per cent of services reported recording rescheduled appointments rates. Rescheduled appointments ranged from 0 40 per cent (median 10 per cent). The highest proportion of rescheduled appointments was reported by the Gold Coast Outpatient Liver Clinic (40 per cent). Fifty per cent of services (total services=14) report per cent compliance with the 5 working day triage policy, 14 per cent indicated below 10 per cent compliance. Forty-six per cent of services (total services=26) reported recording the number of discharges from their service Funding and service delivery model/s A report on access to specialist outpatient services in Queensland public hospitals in 2007 described the then current service delivery model. In Queensland, patients are able to access free specialist outpatients services within the public hospital system under an agreement between the Australian and Queensland Governments. Through these arrangements patients receive multidisciplinary tertiary-level care including access to all diagnostic tests at no cost. Services are provided by visiting specialists who are paid an hourly rate and full-time staff specialists employed under option a or option b agreements. Hepatitis B in Queensland: A situation analysis 47

48 Under option a, arrangements full-time staff are paid a loading with any revenue generated from private practice being retained by QH. Under option b, full-time staff have right of private practice, however the revenue generated is shared with the hospital. The committee acknowledged that option a has been widely taken up by full-time staff, with minimal private practice revenue generated in return. This is mainly attributed to the complexities associated with having patients who present for care within the public system electing to be treated privately. There is a high level of substitutability between public hospital outpatient services and specialist services provided in private practice. The main distinguishing features between the two types of services are: No out-of-pocket costs for patients for public hospital outpatient services; Organisation of simultaneous multidisciplinary consultation is easier in public hospital outpatient services There is a greater level of teaching of medical trainees undertaken in public hospital outpatient services 93. Under the previous Australian Health Care Agreement, the Queensland Government was committed to providing funding to support a pre-determined level of specialist outpatient services across the state. This activity level is commensurate with the level provided in Any activity provided over and above this level could be charged back to the Australian Government through the Medicare Benefits Schedule (MBS). In 2010, the Commonwealth and States and Territory Governments signed the National Healthcare Agreement and National Partnership Agreement on Hospital and Health Workforce Reform. Currently funding for outpatients is on a service event basis and applies to named specialist clinics and excludes community, drug and alcohol, outreach and district nursing services. Funds reflect specialist consultant staff costs, ancillary services (i.e. pharmacy, imaging and pathology) and other cost components. Funding is reflective of the type of activity identified within specialty clinics and reported through the Monthly Activity Collection (MAC) 94. By comparison, QH public specialist sexual health services operate both attached to Departments of Medicine in tertiary hospitals or under the umbrella of Primary and Community Health Services. Services are free and confidential. Funding is provided through various arrangements including core HSD funding; special purpose grants or initiative based funding (e.g. prostitution reforms, contract tracing), clinical trials, and other project based funding. Queensland Health specialist sexual health services focus their services on population groups who may have difficulty accessing private services, or who through their behaviours or social disadvantage may be at greater risk of contracting STIs or BBVs. Sexual health services facilitate access to services that are non-discriminatory and apply strict confidentiality and privacy provisions. Services often conduct outreach clinics to improve access to services for difficult to reach populations. This is Hepatitis B in Queensland: A situation analysis 48

49 particularly important in rural and remote settings including for Aboriginal and Torres Strait Islander communities. Shared care arrangements between specialists and GPs are increasingly seen as an appropriate model of care to increase access to treatment for both hepatitis C and hepatitis B. Continuing new hepatitis C and hepatitis B infections, evolving service delivery models and increasing complexity of care are likely to continue to impact on the demand for services for the foreseeable future. Other models such as the role of nurse practitioners could also be explored, particularly in relation to monitoring and maintenance therapy Clinical trials Approximately half of the viral hepatitis services responding to the HAHCSH Services Survey report that they seek to improve access to clinical trials for their clients, however only two sites are able to report that they are in a position to foster industry driven trials and research. Only one site reported that it conducts surveys amongst affected communities General practitioner engagement Both hepatitis C and B management require the increased involvement of general practitioners in day-to-day management of these chronic conditions. Enhanced primary care items for chronic disease are available to be used for people with chronic conditions such as HIV, hepatitis C and B. Currently there is limited promotion or use of these items within general practice to facilitate access to allied health and other services such as dieticians, physiotherapists and dentists. The vast majority of respondents to the Viral Hepatitis Snapshot Survey indicated that they currently refer patients to primary and community care services Role of Non-Government Organisations (NGOs) The findings of the HAHCSH Services Survey in relation to NGOs largely reflect their expected service obligations under their QH Service Agreements. Whilst most NGO programs fall broadly under the heading of education and prevention or treatment and care, all clearly identify that they have significant roles to play in delivering other aspects of the Strategy with a particular focus on enabling environments for the populations they represent, as shown in Figure 3. Community Based Organisations - Enabling Environment Work with local Gov't agencies Community participation in service delivery Community programs for affected populations. Support consumer advocacy Feedback and complaint processes. Awareness of rights of at-risk target groups Focus on migrants and refugees. Local Strategy planning Indigenous collaboration and engagement % of Services Figure 3. Reported activity of the non-government sector to assist in enabling the environment for implementation of the HAHCSH Strategy. For instance all of these NGOs consider that it is within their role to work with government agencies to improve health outcomes, promote NGOs as points of Hepatitis B in Queensland: A situation analysis 49

50 referral, provide opportunities of active participation of affected population groups in service delivery and support community based programs for affected populations. Ninety per cent believe it is within their role to support consumer advocacy as well as maintain feedback mechanisms on their services. Sixty-three per cent report that they are aware of the rights of at-risk populations and providing a focus in their service on migrants and refugees. Regardless of their funded roles almost all agencies indicated they also have a role to play in education and prevention initiatives with all reporting that they incorporate education into their service delivery mechanisms and greater than 90 per cent promoting safe behaviours and providing access to resources. Individual agencies particularly focus on the populations for which they are funded, however most (72 per cent) also make sure that their services reach rural and remote settings and 63 per cent identify reaching out to correctional centre populations. Less than half report developing responses that are culturally appropriate to Indigenous populations. Family Planning Queensland, Positive Directions, Hepatitis Queensland and Queensland Positive People make up the majority of responses in relation to treatment and care. Importantly, all report promoting screening to at risk populations, encouraging screening based on risk assessments, monitoring changes to treatment trends and conducting service audits. Queensland Health clinical services indicated that they refer patients to a range of community support organisations for the following support: oral health alcohol, tobacco and other drugs support and rehabilitation programs healthy lifestyle mental health support weight reduction family support teams dietetics harm reduction rehabilitation services smoking cessation State and national strategic directions and reporting The National Hepatitis B Strategy proposes innovative models of monitoring and treatment that increase access to clinical services (including general practitioners and other health care professionals). This may include GP prescribing for hepatitis B treatment particularly in areas with limited access to specialist services. QH participates in national forums and is contributing to the national discussion on issues associated with hepatitis B treatment. The indicators from the strategies have been provisionally mapped against each action item, while the measures of success will be developed consultatively and with regard to the National Strategies Monitoring and Surveillance Plan in development through collaboration between the BBV and STIs Sub (BBVSS) Committee of the Australian Population Health Principal Development Committee (APHPDC) and Communicable Diseases Network Australia (CDNA). The indicators and measures of Hepatitis B in Queensland: A situation analysis 50

51 success will remain somewhat fluid until the monitoring and evaluation plan is complete 95. The following broad goals, objectives and indicators have been included in the National Hepatitis B Strategy Implementation Plan and will guide reporting on the outcomes of the implementation 96. GOAL OBJECTIVE INDICATOR 1 To reduce the transmission of hepatitis B Reduce hepatitis B infections A. Incidence of hepatitis B (National Healthcare Agreement) B. Coverage of hepatitis B vaccination among children and adolescents (Essential Vaccines National Partnership Agreement) To reduce the morbidity and mortality caused by hepatitis B To minimise the personal and social impact of hepatitis B Reduce the proportion of people with chronic hepatitis B who have not been diagnosed Improve the health and wellbeing of people with chronic hepatitis B, through access to clinical services, screening, treatment, education and support C. Estimated proportion of people with chronic hepatitis B who have not been diagnosed D. Notifications of acute and unspecified hepatitis E. Proportion of people who die from hepatocellular carcinoma within 12 months of hepatitis B diagnosis F. Proportion of people with chronic hepatitis B who meet criteria for hepatocellular carcinoma who are receiving annual screening G. Incidence of hepatocellular carcinoma attributed to hepatitis B H. Proportion of people with chronic hepatitis B dispensed drugs for hepatitis B infection through the through the Highly Specialised Drugs (s100) Program 1 In areas where data are available Hepatitis B in Queensland: A situation analysis 51

52 Appendix 1 Directory of Queensland services supporting people with hepatitis B 1.0 Government organisations 1.1 CHO CHO is responsible for coordinating and providing leadership for public health planning, strategy development, implementation, monitoring and evaluation. The division implements, coordinates and supports public health programs for priority health issues of national, state-wide and local significance, undertakes health surveillance and disease control initiatives including response to disease outbreaks, and implements or oversees the implementation of public health legislation. The division is distinguished from other roles of the health system by its focus on the health and well-being of populations, rather than individuals. The objectives are: protecting health preventing disease, illness and injury promoting health and well-being. The division achieves this by working collaboratively with and supporting a range of organisations including health services, government departments, local government, NGOs, research institutions and local communities Communicable Diseases Branch Location: Health Protection Directorate, CHO, Brisbane Geographical Coverage: Queensland Services: QH s Communicable Diseases Branch is responsible for the surveillance, prevention and control of communicable diseases in Queensland. This involves overseeing legislation, policy, and operational management of communicable diseases. In particular, the branch focuses on preventing disease spreading from person to person and from animals to people. As part of protecting the public health of Queenslanders, the branch coordinates Queensland s vaccination program, monitors disease outbreaks and plans for emerging pandemics and biosecurity threats. The branch has a lead role in developing and facilitating implementation of strategic actions to prevent and control BBV and STI, in partnership with stakeholders Queensland Needle and Syringe Program Location: Health Protection Directorate, CHO, Brisbane Geographical Coverage: Locations of services offering a needle and syringe program include: Northern Queensland: Central Queensland: Western Queensland: Broader South East Queensland: South East Queensland: Services: The aim of the Queensland Needle and Syringe Program is to reduce the harms associated with injecting drug use (including the transmission of blood borne viral infections such as HIV/AIDS, hepatitis B and C) without condoning such drug use. Hepatitis B in Queensland: A situation analysis 52

53 1.1.3 Public health units Location: CHO Geographical Coverage: Queensland Services: There are 14 Public Health Units in Queensland which support the statewide focus of the division, to address a diverse and often contrasting range of impacts on public health including disease control initiatives, epidemiology and enforcement of public health legislation and policies including emergency management, environmental toxicology, food safety, regulated drugs and poisons and tobacco control and health promotion programs Offender Health Services Location: CHO Geographical Coverage: Queensland Services: The Clinical Services Unit of Offender Health Services is responsible for directing and delivering clinical services (primary health care) to an offender population of approximately 5,500. Clinical Services Unit is supported by a team in Brisbane who lead health policy and program development and implementation for offenders, particularly those pertaining to substance abuse, communicable diseases and preventative health. The unit provides professional supervision and clinical advice to the nursing workforce and health practitioners. Clinical Services Unit also directs clinical quality management strategies, health surveillance programs and the clinical standards and accreditation processes. There is a QH, Offender Health Service within each correctional centre across the state, excluding two privately run correctional centres. Each Offender Health Service coordinates and delivers multidisciplinary health services for offenders. Mental health services are provided for offenders by QH Prison Mental Health Service in south east Queensland or local HSD Mental Health Services for northern centres. Outpatient services are generally provided for offenders through the PAH in South East Queensland and the local HSD for northern centres. Visiting dental teams and optometrists provide in-reach services to the Offender Health Services located in the eight high security correctional centres. Offenders at low security farms may have to be temporarily returned to secure centres to access these services. Psychologists, drug and alcohol counsellors, indigenous counsellors and related services are provided by Queensland Corrective Services at individual correctional centres and administratively are not part of Offender Health Services. Health centres are located at: Brisbane Offender Health Service, Wacol, Brisbane Brisbane Women s Offender Health Service, Wacol, Brisbane Capricornia Offender Health Service, Rockhampton Darling Downs Offender Health Service (low security farm), just outside Toowoomba Lotus Glen Offender Health Service, Atherton Tablelands (close to Mareeba) Maryborough Offender Health Service, Maryborough Numinbah Offender Health Service (low security farm), Gold Coast Hinterland Palen Creek Offender Health Service (low security farm), Beaudesert Hepatitis B in Queensland: A situation analysis 53

54 Townsville Offender Health Service (covers Men s and Women s correctional centres), just outside Townsville Woodford Offender Health Service, Woodford, just west of Caboolture Wolston Offender Health Service, Wacol, Brisbane 1.3 Refugee Health Queensland Refugee health services aim to address gaps in existing health services to clearly identify and address health issues and inequities for newly arrived refugees. Refugees and asylum seekers are provided with standard initial health assessments that include catch-up vaccinations where required. The service also provides coordination of health management in the short-term and referral to existing services for continuing care. Location: The Refugee Health Queensland service model is a hub and spoke model. The hub is based at the Mater Health Services, Brisbane and the spokes are located in Zillmere, Logan, Toowoomba, Townsville and Cairns. The hub is responsible for the coordination, education, support and quality monitoring services. The spokes provide direct clinical care services to the client group in the local area. Geographical Coverage: Queensland Services: Refugees, special humanitarian entrants and asylum seekers will be provided with: standard initial health assessments, including public health screening and catch-up vaccination coordination of short term health management with additional support for complex cases supported referral to existing services for continuing care, in particular, general practitioners. 1.4 Health service districts HIV/AIDS, Hepatitis C and Sexual Health Coordinators There are six HIV/AIDS, Hepatitis C and Sexual Health Coordinators working across HSDs to support implementation of state and national strategies, coordinate service responses, advocate for relevant programs and services and to inform HSD service planning and reporting Health promotion officer (Viral Hepatitis) There is one health promotion officer located in Cairns with a specific focus on viral hepatitis health promotion. This position also supports some statewide strategic activities, where appropriate Torres Strait Hepatitis B Working Group There is a working group comprised of staff from the Cairns Public Health Unit, Torres Strait Men s and Women s Health, Cairns Sexual Health Service, The Cairns Base Hospital Liver Clinic, and La Trobe University. A situation analysis and journal articles will be released by this group. 1.5 Public hospital There are 165 public hospitals in Queensland providing a range of services including: Specialist Outpatient Services Haemophilia Treatment Centre (statewide) Oncology services Liver Transplant Services Infectious Diseases Services. Hepatitis B in Queensland: A situation analysis 54

55 1.5.1 Specialist Outpatient Liver Clinics Mater Misericordiae Adult Hospital Liver Clinic Location: South Brisbane Geographical Coverage: South East Queensland Services: Treatment management. Participates in shared care Princess Alexandra Hospital Hepatitis Management Clinic Location: Woolloongabba, Brisbane Geographical Coverage: Metro South Services: Treatment management. Participates in shared care Royal Brisbane and Women s Hospital Location: Herston, Brisbane Geographical Coverage: Metro North Services: Treatment management. Participates in shared care Bundaberg Hospital Liver Clinic Location: Bundaberg Geographical Coverage: Wide Bay Services: Treatment management Cairns Base Hospital Liver Clinic Outpatients Department Location: Cairns Geographical Coverage: Cairns and Hinterland, Cape York, Torres Strait-Northern Peninsula Services: Treatment management. Participates in shared care Gold Coast Liver Clinic Gold Coast Centre for Digestive Diseases Location: Southport, Gold Coast Geographical Coverage: Gold Coast Services: Treatment management. Participates in shared care Gold Coast Hospital Gastroenterology and Hepatology Liver Clinic Location: Nerang, Gold Coast Geographical Coverage: Gold Coast Services: Treatment management. Mackay Liver Clinic Location: Mackay Geographical Coverage: Mackay Services: Treatment management. Participates in shared care Rockhampton Hepatitis Services Location: Rockhampton Geographical Coverage: Central Queensland and Central West Services: Treatment management. Participates in shared care Nambour General Hospital Liver Clinic Location: Nambour Geographical Coverage: Sunshine Coast Services: Treatment management. Participates in shared care Kobi House Toowoomba Base Hospital Location: Toowoomba Geographical Coverage: Darling Downs and South West Hepatitis B in Queensland: A situation analysis 55

56 Services: Treatment management. Participates in shared care Townsville Hospital Liver Clinic Location: Douglas Geographical Coverage: Townsville and North West Services: Treatment management. Participates in shared care Haemophilia Treatment Centre Location: The Queensland Haemophilia Centre has a Child and Adolescent Centre based at the RCH and an Adult Centre at the RBWH. Geographical coverage: The Queensland Haemophilia Centre provides a regional and rural service with outreach clinics to regional centres, liaison with local health professionals and telephone contact with people with inherited bleeding disorders. Outreach clinics occur on a regular basis in Toowoomba, Gold Coast Nambour, Cairns, and Townsville. Services: The centre deals with a wide range of issues including factor replacement therapy, musculo-skeletal and orthopaedic assessment, blood-borne viruses, genetic counselling, psychosocial support and counselling Liver transplant services Location: PAH, Ipswich Road, Woolloongabba Q 4102 Geographical coverage: Queensland Services: The Queensland Liver Transplant Services is based at PAH and RCH where adult and paediatric patients are transplanted respectively. 1.6 Mental health services Public mental health services are provided in each of the 20 Queensland Health districts. They deliver specialised assessment, clinical treatment and rehabilitation services to reduce symptoms of mental illness and facilitate recovery. These services are focused primarily on providing care to Queenslanders who experience the most severe forms of mental illness and behavioural disturbances, and those who may fall under the provisions of the Mental Health Act Public mental health services work in collaboration with primary health and private sector health providers who assist individuals with mental health problems and facilitate access to specialist public and private mental health services when required. To locate your nearest public mental health services go to our directory of mental health services in Queensland. 1.7 Primary and community health services Primary and Community Health Services provides a range of services including alcohol and drug, sexual health, healthy ageing and chronic disease services and programs with the aim to improve the health and wellbeing of the local community Sexual health services It should be noted that a number of public sexual health services are situated in the Departments of Medicine within hospital facilities. Bamaga Sexual Health Service Location: Bamaga Geographical Coverage: Bamaga and northern peninsula area. Services: Sexual health checks, men s health, contraception, women s health including antenatal, emergency contraception, HPV vaccines. Hepatitis B in Queensland: A situation analysis 56

57 Q Clinic Wide Bay Sexual Health Service Location: Bundaberg. Geographical Coverage: Wide Bay area including Bundaberg, Fraser Coast and North Burnett. Services: Sexual health testing and treatments, condoms, lube and dams provided, Pap smear screening, hepatitis B vaccinations for at risk clients, emergency contraception, pregnancy testing and referral, community education and health promotion, professional in-services, hepatitis C testing, counselling and referral, HIV management and share care option, needle and syringe program. Thursday Island Men s and Women s Health Location: Thursday Island. Geographical Coverage: Torres Strait Islands and Thursday Island. Services: Women s health screening, HIV management, STI screening, treatment, contact tracing, counselling and follow-up, family planning advice, Pap smear screening and breast examination, colposcopy bookings, support for sexual assault cases. Cape York Men s and Women s Health Location: Weipa. Geographical Coverage: Weipa and outreach clinics in Mapoon, Coen, Napranum, Lockhart River, Kowanyama, Pompuraaw and Aurakun. Services: STI screening, contraception emergency contraception, Pap smear screening, HPV & HBV vaccination, condoms and lube pregnancy advice. Townsville Sexual Health Unit Location: Townsville Hospital, North Ward. Geographical Coverage: Townsville district. Services: Sexually transmitted infection testing and treatment, HIV and HCV testing and management, Post-Exposure Prophylaxis (npep), needle and syringe program, contraception counseling and advice, emergency contraception, sexual assault counselling and management, telephone counselling and information. Kobi House Location: Toowoomba Base Hospital, Toowoomba. Geographical Coverage: Toowoomba and environs. Services: Free and confidential sexual health screening and assessments, management of STIs, immunisations for at risk clients, sexual assault service, needle and syringe program, HIV management, hepatitis C assessment and referral, HIV PEP, pregnancy testing, emergency contraception, screening for sex industry workers, contact tracing services. Rockhampton Sexual Health Clinic, Canning Street Clinic Location: Rockhampton. Geographical Coverage: Rockhampton Health Service District. Services: Sexual health testing and treatment, condoms, lube and dams provided, sexual and reproductive health including Pap smears, hepatitis B vaccinations for at risk clients, emergency contraception, pregnancy testing and referral, community education and health promotion, hepatitis C testing, counselling and referral, HIV management and shared care option, needle and syringe program available, screening for sex industry workers, npep. Clinic 87 Sunshine Coast and Wide Bay Sexual Health and HIV Service Location: Nambour and outreach clinics in Caloundra, Maroochydore and Noosa Geographical Coverage: Sunshine Coast. Hepatitis B in Queensland: A situation analysis 57

58 Services: HIV specialist medical care and treatment, sexual health check-ups, testing, information and treatment for STIs and related conditions, anonymous and confidential HIV testing, hepatitis B and HPV vaccination for at risk groups, family planning and contraceptive services for certain groups of people, emergency contraception, genital symptoms, concerns or dermatology, transgender/sexuality issues, sexual dysfunction, men's health check, post exposure prophylaxis for HIV, pap smears collection in conjunction with STIs screening, screening for sex industry workers, contact tracing, education and training services. Redcliffe Sexual Health Service Location: Redcliffe Community Health Centre, Kippa Ring and outreach clinics in Caboolture. Geographical Coverage: Redcliffe, Caboolture, Deception Bay and surrounding areas. Services: General sexual health checks, testing and management of HIV/AIDS, vaccinations (hepatitis B, Gardasil), post-exposure prophylaxis, emergency contraception, pregnancy testing, free condoms and lube. Mt Isa Sexual Health Services Location: Mt Isa Geographical coverage: Mt Isa Sexual Health Services Services: Hepatitis C management, sexual health management, testing and treatment, HIV management, contraception and pap smears, education, health promotion, PEP, needle and syringe program, erectile and sexual dysfunction. Mackay Sexual Health and Sexual Assault Service Location: Community Health Centre, Mackay. Geographical Coverage: Mackay City, south to St Lawrence, west to Moranbah, Clermont, Tieri, Glenden, Dysart and Middlemount, and north to the Whitsundays, Bowen and Collinsville. Services: Screening, testing and treatment for sexually transmissible infections, breast and testicular examination, contraception, hepatitis B vaccination for at risk clients, sexual dysfunction counselling and treatment, education and health promotion, pap smears, screening and treatment for HIV, hepatitis B and hepatitis C, pregnancy testing, emergency contraception, indigenous sexual health service, gender issues counselling and support, condoms and lube, npep. Logan Sexual Health Service Location: C/- PAH travelling clinic Ipswich Sexual Health Service Location: Ipswich Health Plaza. Geographical Coverage: Ipswich and surrounding areas. Services: Sexual and reproductive health, emergency contraception, HIV and HCV management, PEP, counselling, support and referral, health promotion, community education, needle and syringe program. Brisbane Sexual Health Clinic Location: Brisbane. Geographical Coverage: Brisbane and surrounds. Services: Sexual health checks, testing, treatment and management of sexually transmissible infections, HIV PEP, hepatitis B vaccination, free condoms and lubricant. Hepatitis B in Queensland: A situation analysis 58

59 Cairns Sexual Health Clinic Location: Cairns Base Hospital, Geographical Coverage: Cairns city and surrounding region, Services: Testing and treatment of sexually transmissible infections, HIV and hepatitis, condoms/lube, needle and syringe packs, contraception, emergency contraception & pregnancy options, PEP, transgender care, sexual health counselling and information, Indigenous sexual health, contact tracing, information and resources. Gold Coast Sexual Health Service Location: Miami, Gold Coast. Geographical Coverage: Gold Coast. Services: STI testing and treatment, HIV management, sexual health certificates for sex workers, sexual health counselling, information, education and advice. Princess Alexandra Sexual Health Service Location: PAH, Woolloongabba, Brisbane AIDS Medical Unit Location: 2nd Floor, 270 Roma Street, Brisbane. Geographical coverage: Queensland and Northern New South Wales. Interstate visitors. Services: Community-based HIV medical and nursing management for those people infected and affected by HIV/AIDS. This includes the following: HIV testing, medications, management, education and information; npep (Non-occupational Post Exposure Prophylaxis); hepatitis B vaccination Charges/costs: Standard PBS charges apply for prescriptions. Notes/comments: All contact with this Centre is treated in the strictest confidence Alcohol and drug treatment services Queensland Health implements a range of programs and services in partnership with government, non-government, and private organisations, to prevent, minimise and respond to alcohol, tobacco and other drug use and harm. Treatment for alcohol and other drug issues involves a range of interventions including screening, opportunistic and brief intervention, assessment, individual treatment planning, case management, counselling and referral for detoxification, residential rehabilitation or other appropriate services. Clients presenting to alcohol and drug services are assessed for the severity of drug use, motivation to change and treatment needs. Assessment includes decisions about the type of treatment and support to be provided, and indicates whether it is appropriate to refer an individual for further treatment and support. Referral may be for detoxification, rehabilitation, mental health, psychosocial or psychiatric interventions, self-help groups, medical specialists or general practitioners. Queensland Health supports a range of dedicated alcohol, tobacco and other drug treatment services and programs delivered by government, NGOs and communitybased organisations. Programs include opioid treatment, needle and syringe distribution, drug withdrawal, counselling, hospital consultation and liaison services and rehabilitation. Hepatitis B in Queensland: A situation analysis 59

60 For information regarding the location of your nearest alcohol, tobacco and other drug service, please call the 24 hour Alcohol and Drug Information Service on or visit Some Alcohol and Drug Services provide Vaccination (HBV) Recall system for monitoring HBV (LFT). 2.0 Private sector services 2.1 General practice General practice aims to provide quality healthcare for all in the field of primary health care. General practice is the frontline of healthcare. A general practitioner may work with a diverse range of patients while providing a variety of health services including diagnosis, health promotion and education activities as well as solving medical problems thought treatment and preventative medicine. The following is a summary of information extracted from General Practice Queensland and provides a brief over view of general practice services in Queensland. There are approximately 4,499 GPs in Queensland and 1,253 general practices. Approximately 27 per cent of general practices are solo GP practices. There are 2,091 practice nurses. The practice nurse to general practice ratio is one general practice to 1.67 practice nurses. There are two GP Super Clinics operational in Strathpine and Ipswich, with a further 14 clinics being established in sites across Queensland. In addition to general practice services a range of outreach services exist which offer increased access to medical specialists across rural and remote communities and to Aboriginal and Torres Strait Islander people(s) in urban and rural and remote communities. These include: the Medical Specialist Outreach Assistance Program (MSOAP); Medical Specialist Outreach Assistance Program Indigenous Chronic Disease (MSOAP- ICD) Urban Specialist Outreach assistance Program (USOAP) Private hospitals There are 105 Private Hospitals in Queensland Greenslopes Private Hospital Liver Clinic Location: Greenslopes, Brisbane. Geographical Coverage: South East Queensland. Services: Treatment management. Hepatitis B in Queensland: A situation analysis 60

61 2.1.2 Private Specialists and other Health practitioners There are also a range of private providers who interact with Queensland public sector services, GPs and NGOs. This includes specialist gastroenterologists, hepatologists, dermatologists and other allied health practitioners (e.g. mental health; dieticians, physiotherapists). 3.0 Non-government organisations (NGO) Ethnic Communities Council of Queensland (ECCQ) Location: West End, Brisbane. Geographical Coverage: Queensland. Services: ECCQ is a non-profit, member-based state-wide peak body. ECCQ contributes to national policy and debate on all matters concerning ethnic communities and multiculturalism. The ECCQ HIV, Sexual Health and Viral Hepatitis Project Team provide information, support and advocacy for CALD communities around viral hepatitis, including hepatitis B. Queensland Injector s Health Network (QuIHN) Brisbane Location: Brisbane, Cairns, Sunshine Coast (Cotton Tree), Gold Coast (Burleigh) Geographical Coverage: Queensland Services: QuIHN is a not for profit, non-government and state-wide organisation that addresses illicit drug use in the community by providing confidential clinical and nonclinical counselling, social support services and life skills programs, non- residential rehabilitation programs, education and training, needle and syringe programs, health promotion, advocacy and outreach services, and information programs that relate to illicit drug use, blood borne viruses, sexual health, and/or psycho social and physical health issues affecting illicit drug users. QuIHN has a particular focus on working with injecting drug users in order to prevent the spread of HIV, Hepatitis C and STI s. Queensland Association for Healthy Communities (QAHC) Brisbane Location: Brisbane, Sunshine Coast (Maroochydore) and Cairns. Geographical Coverage: Queensland. Services: QAHC is a state-wide, not-for-profit, community based organisation that promotes the health and well-being of lesbian, gay, bisexual and transgender Queenslanders. Queensland Association for Healthy Communities 2 Spirits Program Location: Headquarters are in Brisbane Geographical Coverage: Queensland Services: The 2 Spirits program aim to improve the sexual health of Aboriginal and Torres Strait Islander gay men and sistergirls through a 'Whole of Community Approach' to education, prevention, health promotion and community development activities. Hepatitis Queensland Location: South Brisbane Geographical Coverage: Queensland Services: Hepatitis Queensland is a state-wide, not-for-profit, non-government, community organisation. It provides: a free confidential telephone information and support service free counselling with a registered psychologist; face-to-face or over-the-phone education and training to organisations, schools and businesses support groups and information evenings and events free brochures, fact-sheets, DVD's and newsletters on viral hepatitis. Hepatitis B in Queensland: A situation analysis 61

62 Family Planning Queensland (FPQ) Location: Brisbane, Ipswich, Rockhampton, Toowoomba, Townsville, Cairns, Bundaberg, Sunshine Coast, Gold Coast Geographical Coverage: Queensland Services: FPQ is a state-wide organisation offering clinical, education, and information services through its nine regional centres. FPQ also provides clinical training in all aspects of sexual and reproductive health, and has a comprehensive resource catalogue to support teachers, parents and young people Pharmacy Guild of Australia Queensland Location: Brisbane Geographical Coverage: Queensland Services: The Pharmacy Guild represents community pharmacies across Queensland. It seeks to serve the interests of its members and to support community pharmacy in its role delivering quality health outcomes for all Queenslanders. Services specifically relating to hepatitis B include: support and evaluation of the Queensland Pharmacy Needle and Syringe Program training regarding travel health (offered through the Pharmacy Guild of Australia). Haemophilia Foundation Queensland Location: Brisbane Geographical Coverage: Queensland Services: The Haemophilia Foundation Queensland represents people with haemophilia, von Willebrand disorder and other related inherited bleeding disorders, and their families through advocacy and representation, education and research. The Haemophilia Foundation Queensland offers support and education for people with dual diagnosis, including haemophilia and HIV/hepatitis B and C. Respect Inc. Location: Townsville, Brisbane and Cairns Geographical Coverage: Queensland Services: Respect Inc. provides a formal medium to communicate sex worker issues and concerns so as to improve the rights of our peers and respond to our workplace health and safety and other needs regardless of gender, age, location, industry sector, legal status, cultural background or linguistic abilities. HIV and HCV Education Projects University of Queensland Location: Brisbane Geographical Coverage: Queensland Services: The HIV and HCV Education Projects of the School of Medicine specialises in the provision of quality evidence-based clinical education for the complete range of health care professional areas, specialising in the domains of HIV, sexual health, and viral hepatitis. Queensland Positive Speaker s Bureau Location: Brisbane Geographical Coverage: Queensland Hepatitis B in Queensland: A situation analysis 62

63 Services: Focuses on creating innovative training programs and presentations to educate everyone about the psychology issues and the latest medical aspects and treatment programs covering HIV and Hepatitis. Aboriginal medical services An Aboriginal Medical Service (AMS) is a primary health care service funded to provide holistic and culturally appropriate health care to Aboriginal and Torres Strait Islander individuals. There are 27 AMS s in Queensland (not including AMS outreach facilities) Queensland Aboriginal and Islander Health Council (QAIHC) Location: Brisbane Geographical Coverage: Queensland Services: The QAIHC is the state s peak body representing, advocating and supporting Queensland s Community Controlled Health Services (CCHS) sector in delivering comprehensive, primary health care solutions to their communities. QAIHC has a Sexual Health and BBV Coordinator. QAIHC Members include: The Aboriginal and Islander Community Health Service Brisbane Ltd The Aboriginal and Torres Strait Islander Community Health Service (Mackay Ltd) Apunipima Cape York Health Council Barambah Regional Medical Service (Aboriginal Corporation) Bidgerdii Aboriginal and Torres Strait Islander Corporation Community Health Services Central Queensland Region Bundaberg Indigenous Wellbeing Centre Carbal Medical Centre Charleville and Western Areas Corporation for Health (CWAATSICH) Cunnamulla Aboriginal Corporation for Health The Girudala Community Co-operative Ltd Goolburri Health Advancement Aboriginal Corporation Goondir Health Service Gurriny Yealamucka Health Service Aboriginal Corporation Injilinji Youth Health Service Kalwun Health Service The Kambu Medical Centre Pty Ltd Korrawinga Aboriginal Corporation Mount Isa Aboriginal Community Controlled Health Organisation Mudth-Niyleta Aboriginal and Torres Strait Islander Corporation Nhulundu Wooribah Indigenous Health Organisation North Coast Aboriginal Corporation for Community Health Wuchopperan Health Service Yulu Burri-Ba Aboriginal Corporation for Community Health Yapatjarra Health Service. Hepatitis B in Queensland: A situation analysis 63

64 4.0 Pharmaceutical companies Bristol-Myers Squibb Australia Location: Noble Park North Victoria Geographical Coverage: Queensland Services: Bristol-Myers Squibb is a global biopharmaceutical company whose mission is to discover, develop and deliver innovative medicines that help patients prevail over serious diseases. In addition to producing anti-viral medication for the treatment of hepatitis B, they also provide hepatitis B education events for health professionals. Roche Australia Location: Brisbane Geographical Coverage: Queensland Services: Roche develops and provides diagnostic and therapeutic products and services. In addition to producing anti-viral medication for the treatment of hepatitis B, they also provide hepatitis B education events for health professionals. Gilead Sciences Location: United States of America Services: Gilead Sciences is a researched-based biopharmaceutical company. It produces anti-viral medications for the treatment of hepatitis B. Hepatitis B in Queensland: A situation analysis 64

65 Appendix 2 Patient resources Hepatitis B in Queensland: A situation analysis 65

66 Hepatitis B in Queensland: A situation analysis 66

67 Notes This diagram shows the different phases of viral activity for a person who has lived with chronic hepatitis B since early childhood. Sometimes the virus is very active, and at other times it is inactive. The only way for a person with chronic hepatitis B to know which phase they are in is to have some blood tests. The red line shows how much hepatitis B virus (also called hepatitis B DNA) is in the blood during the four phases. The green line shows how much damage is being done to the liver during each phase. Liver damage can usually be measured by the amount of Alanine Aminotransferase (or ALT for short) the liver produces. The blue line shows that these phases occur over time. Phase 1 Immune tolerance phase: There are high levels of hepatitis B virus in the blood and liver damage is not occurring. This phase often lasts from birth or early childhood until early adulthood, but can vary. When the virus enters the body at birth or in early childhood it is not recognized as being a threat and so the immune system doesn t react against it. Because the immune system doesn t recognise the virus, there is no or little liver damage being done despite the high levels of hepatitis B virus. Phase 2 Immune clearance phase: The immune system tries to clear the virus and mostly begins for people in early adulthood. This is the phase when the most damage happens to the liver. It is important that doctors know when people with chronic hepatitis B move into Phase 2, because treatment reduces the risk of severe liver disease. Without treatment, in most people the immune system will eventually control the hepatitis virus, and in some cases even clear the infection. There may, however, be permanent liver damage. Hepatitis B in Queensland: A situation analysis 67

68 Phase 3 Immune control phase: There are only low levels of the hepatitis B virus in the body with no further obvious liver damage occurring. In the past, people in this phase were sometimes called healthy carrier. More recent studies show that, because hepatitis B can reactivate, there is no such thing as a healthy carrier. It is vital that people in this phase see their doctor regularly to monitor their liver function, because in some people the hepatitis B virus will reactivate. Phase 4 Immune escape phase: In some people the actual virus changes. This can lead to more liver damage, and most commonly occurs during adulthood. As with phase 2, it is important that doctors can tell when this phase happens, so that treatment can again be considered. Treatment reduces the risk of severe liver disease, including cirrhosis and liver cancer. Chronic hepatitis B can lead to liver cancer. This can even happen in a person without very much liver damage (fibrosis or cirrhosis). Some people with chronic hepatitis B, depending on their gender, age, ethnicity, and severity of disease, need regular testing for early signs of cancer. This involves regular ultrasounds and testing the blood for higher levels of alpha-foetoprotein (AFP). Hepatitis B in Queensland: A situation analysis 68

69 Appendix 3 Clinical resources: Prevention, early detection, and management Hepatitis B in Queensland: A situation analysis 69

70 Hepatitis B in Queensland: A situation analysis 70

71 Antenatal Testing and Blood-Borne Viruses (BBVs). ASHM For health Professionals providing women with antenatal care Hepatitis B in Queensland: A situation analysis 71

72 Appendix 4 Algorithms from The Management of Perinatal Infections 2002 by the Australasian Society for Infectious Diseases. Hepatitis B in Queensland: A situation analysis 72

73 Hepatitis B in Queensland: A situation analysis 73

74 Hepatitis B in Queensland: A situation analysis 74

75 Hepatitis B in Queensland: A situation analysis 75

76 Hepatitis B in Queensland: A situation analysis 76