- New survey highlights an awareness gap around Primary Biliary Cholangitis (PBC),1 an autoimmune liver disease estimated to affect around 5,000 Australians,2 with women making up the vast majority of patients (95%).3
- Despite PBC disproportionately affecting women, few Australians know about the links between liver conditions and persistent fatigue (11%).1
- This September, which is PBC Awareness Month, Australians are being encouraged to pay attention to persistent or unexplained symptoms and speak with a healthcare professional if they have concerns.
Melbourne, Monday 14 September 2026 - Persistent fatigue can be easy to attribute to poor sleep, stress, work pressures or hormonal changes, particularly for women in midlife stages.1 However, results of a new survey released during PBC Awareness Month is highlighting why ongoing or unexplained fatigue should not be dismissed.1
PBC is a chronic autoimmune liver disease estimated to affect around 5,000 Australians,2 with women accounting for 95% of people living with the condition.3 This rare disease causes the small bile ducts in the liver to become inflamed and eventually blocked, leading to a build-up of bile that can cause liver damage.2 People living with PBC often experience persistent fatigue, as well as other symptoms like pruritus (itching), and dry eyes and mouth.3
A new survey commissioned by Ipsen Australia found Australians are far more likely to associate persistent fatigue with everyday factors such as lack of sleep (69%), stress (60%) and work-life pressures (53%) rather than with a liver condition (11%).1
Professor Simone Strasser, Hepatologist at Royal Prince Alfred Hospital and Chair of the Liver Foundation’s Clinical and Scientific Committee, said the overlap between persistent fatigue and common midlife experiences can make ongoing symptoms easy to normalise.
“Fatigue is more than regular tiredness, and it is associated with many conditions. It can have many causes, but when it persists or cannot be explained, it is important not to dismiss it as stress, poor sleep or simply being busy. Anyone concerned about persistent or unexplained changes in their health should speak with their doctor.”
The survey also reveals a significant awareness gap when it comes to PBC, with almost three-quarters of respondents (72%), having never heard of the condition.1 Of those who were aware of PBC (27%), nearly half (47%) do not know what it is.1
Dr Rohit Gupta, Hepatologist at Sunshine Coast University Hospital and lead hepatologist at Australia’s only dedicated PBC clinic, said greater awareness of PBC and liver health is particularly important given it is a rare disease that can be treated.
“PBC can be diagnosed by blood tests commonly available through GPs. It can be a serious condition, so its important that people keep track of their health, recognise when something has changed and feel confident raising those changes with their doctor.”
The findings come amid broader national attention on women’s experiences of the Australian health system. The Australian Government’s #EndGenderBias survey found two-thirds of women who participated reported healthcare-related gender bias or discrimination, including experiences of feeling dismissed or disbelieved and having symptoms attributed to other causes.4
Professor Strasser said PBC Awareness Month is an opportunity to put a lesser-known liver disease, such as PBC, and its disproportionate impact on women on the radar.
“Greater awareness is not about encouraging self-diagnosis. It is about recognising that conditions like PBC, can take different forms and that persistent or unexplained changes in your health deserve a conversation.”
PBC Awareness Month takes place throughout September and aims to increase understanding of PBC and encourage greater recognition of this rare autoimmune liver disease. To find out more about PBC and liver health, visit Liver Foundation Australia at https://liver.org.au/.
ENDS
About Primary Biliary Cholangitis
Primary Biliary Cholangitis is a rare, chronic autoimmune liver disease in which the body's immune system mistakenly attacks the small bile ducts in the liver. Over time, this can cause bile to build up and lead to liver damage.
About the YouGov survey
The YouGov survey was conducted online between 20 to 25 August 2026 among a nationally representative sample of 1,056 Australian adults aged 18 years and over.
Respondents were sourced from the YouGov panel and results were weighted by age, gender and region to reflect the latest Australian Bureau of Statistics population estimates.
About Ipsen
Ipsen is a global biopharmaceutical company, improving patients’ lives through research and innovation in oncology, rare disease & neuroscience.
References
- YouGov. (2026). Ipsen Australia consumer survey, Primary Biliary Cholangitis [data on file].
- French J, van der Mei I, Simpson S Jr, et al. Increasing prevalence of primary biliary cholangitis in Victoria, Australia. J Gastroenterol Hepatol. 2020;35(4):673-679. Accessible at: https://onlinelibrary.wiley.com/doi/10.1111/jgh.14924. Accessed September 2026.
- Liver Foundation. Liver Diseases - Primary biliary cholangitis. Accessible at: https://liver.org.au/your-liver/liver-diseases/primary-biliary-cholangitis-2/. Accessed: September 2026
- Australian Government – Department of Health and Aged Care. #EndGenderBias Survey Summary Report. Accessible at: https://australianwomenshealth.org/wp-content/uploads/2025/01/endgenderbias-survey-results-summary-report_0.pdf Accessed: September 2026
Contact details:
Palin Communications
Sarah Rumsey
0488 060 047
[email protected]