Executive summary: An estimated 226,700 people in Australia are living with chronic hepatitis C. While the numbers of people estimated to have been infected with hepatitis C has reduced over the past 15 years, the number of people with hepatitis C-related liver disease is increasing. Growing older and duration of infection are significant determinants in the progression to cirrhosis amongst people with hepatitis C. There is a lack of social research describing the experiences of people with hepatitis C as they grow older.
Australia’s population is ageing with an increasing number and proportion of people over 65. Government programmatic responses to the ageing population are of a health promotion approach focussing on maintaining older people’s health and independence. Less than five percent of older people in Australia live or will live in aged care facilities with a greater emphasis from government policy on keeping people at home: home based aged care services will have an increasingly important role into the future.
This qualitative, interview-based research conducted with key clinical, community and bureaucratic stakeholders in the Australian hepatitis C sector aimed to identify key issues and challenges relating to ageing and hepatitis C to inform future research directions.
While all participants recognised ageing and hepatitis C as a significant issue for Australia, they acknowledged that there was a lack of specific services (clinical and/or community-based) targeting older people with hepatitis C. The lack of services resulted from the limited contact participants had with older people with hepatitis C, and participants expressed concern of their limited understanding of the needs of older people with hepatitis C.
The lack of services is compounded by the variety of definitions of ageing between the research literature, national policy and stakeholder perspectives. For example, the Australia government considers people over 65 years to be “older”, whereas in the context of people with hepatitis C, participants described ageing as older than 55 years. An Australian Injecting & Illicit Drug Users League investigation into ageing in 2010 describes people who inject drugs who are over 40 years as ageing.
During interviews, significant attention was directed towards discussing whether “age” is a proxy for “severity of liver disease” or whether there are specific-age related issues associated with mild liver disease. Participants acknowledged that older people with hepatitis C often experience co-morbidities related to ageing, in addition to extrahepatic manifestations of hepatitis C infection, which often complicate the management and treatment of hepatitis C. While the clinical management of hepatitis C is changing and new treatments promise a shorter treatment course with fewer side effects, several clinicians expressed guilt in advising older people to wait for interferon-free regimes because of concern about pre-existing comorbidities, while being concerned that advising older people to wait for three to five years for the new treatments may be too late.
Older people with hepatitis C are not identified as a priority population nor are their needs discussed in the National Hepatitis C Strategy 2010-2013. Therefore, it is not surprising that hepatitis C and ageing are not identified as a priority in either the national or state health agenda of the aged care sector. In order to articulate the impact and issues associated with hepatitis C and ageing, the issue of ageing in Australia needs to be examined broadly and the impact of hepatitis C considered in the current context. Exploring the needs of people with hepatitis C as they age needs to occur as a matter of urgency, as older people with hepatitis C are a hidden population. A comprehensive, strategic approach to hepatitis C and ageing is needed to ensure that the needs of older people with hepatitis C do not continue to go unrecognised.