Crohn’s & Colitis Australia Unveils New Research Findings from State of The Nation in Inflammatory Bowel Disease Report

CANBERRA, 11TH FEBRUARY 2025: Crohn’s & Colitis Australia (CCA) has announced the publication of new research findings from its State of the Nation in Inflammatory Bowel Disease (IBD) in Australia report. The research provides an in-depth assessment of the nation in relation to those living with IBD, including Crohn’s disease (CD) and ulcerative colitis (UC), highlighting potential risk factors as well as the solutions on how to improve outcomes.

Key Findings:

Incidence of IBD

• It is estimated that nearly 180,000 Australians are living with IBD today, and within this, just over 91,000 are living with active disease.
• The incidence of IBD is rising globally, and Australia is leading the pack – the growth in prevalence of IBD for Australia is expected to outpace growth in Canada, the UK and New Zealand.
• In contrast to other chronic conditions, IBD is projected to disproportionately impact Australia’s working population, with the peak age of onset occurring between 15 to 29 years.

IBD Patients are among the most ‘Frequent Flyers’ of the Hospital System

• More than 1 in 3 patients experience symptoms over a year before receiving diagnosis.
• IBD patients are found to have a higher rate per case of hospitalisation and emergency department presentation than cancer.
• Just over 1 in 10 patients experience symptoms for over five years before receiving a diagnosis.
• The delay to diagnosis results in further delays in the time to remission, with average time from diagnosis to disease remission being conservatively three years, with more than 40% of people reporting it taking more than 5 years to bring their disease under control. A cause of which is inconsistent access to multidisciplinary teams.

IBD is often associated with serious symptoms outside of the bowel

• Extraintestinal manifestations occur in 17% of patients with UC and 37% of patients with CD, including anaemia, eye disease (uveitis and episcleritis), liver disease and scarring (cirrhosis), skin ulcers and psoriasis, and arthritis.
• Patients with IBD are also more likely to develop colorectal cancer than the general population.

Mental Health Burden of IBD

• Patients report severe fatigue, brain fog and a high mental health burden of disease, placing larger burdens on the need for healthcare services.
• Many patients also experience severe anxiety and depression as a result of their IBD; with 1 in 2 people reporting anxiety, 1 in 3 reported experiencing depression as well as high rates of insomnia.
• Around 1 in 5 people reported they had severe problems or were unable to enjoy or undertake important activities that most people take for granted.
  • 17% had severe problems or were unable to date or have intimate relationships
  • 21% had severe problems or were unable to participate in sports
  • Around 20% had severe problems or were unable to travel overseas
• These findings demonstrate that IBD patients also need a more multidisciplinary approach to their care, than the current approach that is being offered.

IBD Creates Serious Implications for Children

• 18% of children with IBD had severe problems or were unable to participate in sports.
• 19% of children with IBD had severe problems or were unable to sleep well at night.
• 22% of children with IBD had severe problems or were unable to go to school.
• These findings demonstrate the increased burden of IBD on children, the effect on mental health and wellbeing presents a disadvantage to children living with IBD. The impact this has on children creates a knock on effect into adult life if they are not supported effectively from childhood.

The Economic Burden of IBD to Australia

• The total economic impact of IBD to the community in 2025 is expected to reach $7.8 billion.
• Over the next decade, in light of the increasing prevalence of IBD, the total economic burden is estimated to be a staggering $77.9 billion in Net Present Value (NPV) terms over the 2025-2035 period.
• Poorly managed IBD can be debilitating and expensive for the person, their family and Australian governments.
• The economic cost of a person living with severely active disease is 2.5 times that of a person in remission.
• After factoring in the expected loss of income, out-of-pocket costs rise to be 15% of disposable household income with a high risk of financial hardship.

“Understanding the prevalence of IBD, its burden on individuals and the Australian community is essential to the improvement in quality, equity and access to services for people living with these chronic inflammatory gut conditions,” said Leanne Raven, CEO of Crohn’s and Colitis Australia. “We hope this new evidence will help to plan the next important steps to improve quality of life for people living fearlessly with IBD”.

As a result of the State of the Nation in Inflammatory Bowel Disease in Australia Report, CCA has shared a proposed strategy to improve health outcomes with the federal government. The proposal provides options to address priorities from the report for the government to consider, calling out the need for a national IBD clinical standard, a living well with IBD program, an IBD registry and a specific fund for IBD research in the Medical Research Future’s Fund.

For more information about the full report, please visit: crohnsandcolitis.org.au

For more information, interviews or case studies of young people or parents of kids living with IBD, please contact:

Mia Borg | Maven PR | [email protected] | 0413 801 187

About Crohn’s & Colitis Australia (CCA)

Crohn’s & Colitis Australia (CCA) is a not-for-profit organisation dedicated to providing support services, advocacy, and research funding for those affected by Crohn’s Disease and Ulcerative Colitis. CCA strives to improve the quality of life for people living with these chronic conditions through education, support programs, and public awareness campaigns.