Hepatitis B is arguably the most complex of the hepatitis viruses and affects up to 160,000 people living in Australia. There has been no systematic response to addressing the needs of people living with chronic hepatitis B. The needs assessment found that there are significant gaps in the evidence quantifying the burden of hepatitis B on individuals, the health care system and the community as whole.
Most people with chronic hepatitis B in Australia were infected at birth or in childhood. Hepatitis B is often framed as a sexually transmitted infection among medical and public health sectors. This inconsistency has significant implications for its treatment and monitoring.
Cultural understandings of hepatitis B inform how people interpret being infected with hepatitis B. Communities play an important role in providing information about hepatitis B. Communities most affected by chronic hepatitis B in Australia are often affected by the virus in a context of highly disrupted lives; where access to health care services may have been non-existent, and where hepatitis B is not seen as a priority.
People with hepatitis B often report their diagnosis as shocking with little understanding of how infection occurred or the implications of being infected.
People with hepatitis B report no pre or post test discussion and little or no information provided at the point of diagnosis. This fundamentally affects how people with hepatitis B understand and respond to their infection.
There were indications that people with hepatitis B were ill-informed about their infection and that decisions made about health were based on incorrect information. Few resources are available for people with hepatitis B or their families that would assist in understanding their infection and how promote their health and well-being.
Workforce development was identified as necessary for each of the professional sectors interviewed as part of this assessment. There has been little proactive attention by government or the pharmaceutical industry on helping medical and public health professions adapt to the changing hepatitis B environment. The issues to be addressed are broad and range from the provision of basic information about hepatitis B through to the availability of treatment and cultural competency. General practitioners surveyed in this assessment noted a need to strengthen their professional skills in managing patients with hepatitis B.
Priorities for a national response
One aim of this assessment was to describe priorities for a nationally coordinated response to hepatitis B. We have not been proscriptive in making recommendations, but have acknowledged the key stakeholders who need to be involved in achieving the outcomes supported by this report. In achieving these outcomes, lessons from the development of responses to other blood borne viruses need to be applied.
Priority 1 – Build healthy public policy
Until now, public health responses to hepatitis B in Australia have focussed on securing the blood supply; providing treatment through the Pharmaceutical Benefits Scheme, and the funding and implementation of the immunisation program. Participants from all sectors identified the need for additional activity that goes beyond current public health activity and specifically addresses the needs of people with hepatitis B, some of which have been identified in this assessment. Government were identified as pivotal in leading the development of a coordinated response and ensuring that a partnership with government, clinicians, public health professional, and communities most affected by hepatitis B be developed. The lack of resources was identified as a major barrier in developing and implementing specific activities to reduce the impact of hepatitis B upon the community. Activity in the first instance of the development of coordinated responses must include coordination and leadership, which would have a low budgetary impact.
Priority 2 – Getting the data
Current data detailing the burden of hepatitis B are inadequate.
Measuring the hepatitis B epidemic is imperative for justifying and developing interventions to reduce its burden and participants in this assessment identified gaps in the quality and usefulness of data available through current disease surveillance structures. The difficulties in estimating the current incidence and prevalence of hepatitis B in Australia reflect the need for improved surveillance mechanisms.
This assessment provides a strong indication that there are significant questions about hepatitis B which need to be addressed. While cognisant of the lack of resources available within public health, there is strong rationale for additional research to occur to further define the scope of the impact of hepatitis B upon individuals, specific communities including Indigenous communities, the public health system and the broader community.
Priority 3 – Prevention
Hepatitis B infection is preventable, and hepatitis B transmission has declined with the introduction of immunisation. Data from the assessment indicates that there are several populations in which coverage of the immunisation program is less than optimal. There appears to be several reasons for this including visibility of immunisation within specific communities; payment, and administration issues. Activity needs to occur to ensure that the immunisation program addresses gaps in the program, particularly among communities at risk of hepatitis B infection.
Priority 4 – Management and Treatment
Significant barriers and challenges exist in terms of people with hepatitis B accessing treatment. These barriers range from awareness that treatment was available;
the awareness of general practitioners of current treatment protocols, and when to refer through to the relationship between clinicians and patients coming from CALD backgrounds. There were few indications that treatment services were accessing Indigenous people with hepatitis B.
Effective models of care for hepatitis B need to be developed in consultation between people with hepatitis B; affected communities; community health workers; general practitioners; nurses, and specialists. It has been estimated that only a small minority of people are currently receiving treatments that could reduce the risk of morbidity and mortality associated with hepatitis B infection.
Priority 5 – Workforce development
The capacity of the public health system and social welfare services to effectively address the clinical and social needs of people with hepatitis B, particularly given the breadth of cultures and languages of the communities in which people with hepatitis B come from is limited.
Workforce development was identified a need throughout the consultations and is vital for the implementation of an effective response to hepatitis B. The scope of this workforce development was significant with differing groups of professionals requiring professional development on a broad range of issues. The audience for this development includes specialists; general practitioners; nurses; government and other public health workers, and staff and volunteers from community based agencies working with at risk communities. The issues need to cover basic information about hepatitis B through to working with communities whose understandings of health differ from the western medical model.
Priority 6 – Information about living with hepatitis B
There are few resources available for people with chronic hepatitis B which seek to reduce the impact of hepatitis B infection. Being diagnosed with hepatitis B can be shocking, particularly when it occurs in a context of significant disturbance and without information to frame how to understand and effectively respond to the diagnosis. Resources are necessary for people to assist in explanations of the impact of infection, and treatment alternatives for people with hepatitis B. These resources need to provide information about hepatitis B in a culturally appropriate manner and accessible in a range of languages other than English.
Priority 7 – Pre and post-test information
Unlike other blood borne viruses in Australia, there is no formal model of hepatitis B testing and/or diagnosis. The diagnostic event is pivotal for a person with hepatitis B for understanding and incorporating their infection into their lives. A hepatitis B diagnosis often occurs within a context of significant change or disruption, and where understandings of the body and viruses are understood in ways which are completely different from the western medical paradigm.
Priority 8 – Engaging communities with hepatitis B
Specific communities are particularly affected by hepatitis B, and the assessment found that there were varying levels of awareness and knowledge of hepatitis B within these communities. Engaging communities most at risk of infection, or with a higher prevalence of hepatitis B will increase hepatitis B related testing; prevention strategies; treatment access, and support for people with hepatitis B.
Download full paper:
national_hep_b_needs_assesmt (1.38 MB PDF)
NOhep is a global, grassroots movement aimed at bringing all stakeholders together to eliminate viral hepatitis by 2030. It has been developed to create global awareness of the disease, similar to the red ribbon for HIV/AIDS, and was launched in 2016. NOhep firmly positions itself at the forefront of the elimination conversation, showcasing exemplary leadership, fostering on-the-ground innovative solutions and taking action to support the policy changes needed to eliminate this cancer-causing illness by 2030. Being a part of NOhep means being part of the solution. (To find out more about the development of this exciting initiative, watch this short video: https://youtu.be/Oer-rGwnKZU )