Inflammatory bowel disease (IBD) is no longer a rare disease in Australia. Close to 180,000 Australians are now living with Crohn’s disease or ulcerative colitis, with prevalence approaching 1% of the population in some estimates. Unlike many chronic diseases, IBD disproportionately affects young people, with the peak age of onset between 15 and 29 years[2]. This means that a diagnosis can occur at precisely the point in life when someone is completing school or university, entering the workforce, starting a family or building a career. The consequences of poorly controlled disease, and of unequal access to IBD care, therefore extend far beyond symptoms: they can affect education, employment, relationships, mental health and long-term health.
While treating people with IBD across Australia, one observation has become impossible to ignore: two patients with identical diagnoses can receive very different standards of care depending only on their postcode. That observation sits at the heart of a paper I recently co-authored with colleagues from across Tasmania’s health services, published in the Internal Medicine Journal[1]. We used Tasmania as a case study, but the barriers we describe are not unique to one state. They hold a mirror up to how regional areas manage complex chronic diseases compared to metropolitan ones.
Tasmania is a useful lens because it has some of the highest rates of IBD recorded anywhere in the world, alongside a population with generally more advanced cases requiring advanced therapies compared to their fellow states[1]. The underlying pattern of specialist shortages, fragmented multidisciplinary care, and patients falling through gaps between hospitals, primary care and allied health, plays out in regional New South Wales, Queensland and Western Australia just as readily as it does on Tasmania’s North West Coast.
The challenge is becoming greater because IBD care itself is changing rapidly. Over the past decade, treatment has moved well beyond a relatively simple model of prescribing steroids, immunomodulators and a single group of advanced therapies. We now have multiple biologic and small-molecule therapies, increasingly sophisticated treat-to-target strategies, therapeutic drug monitoring, faecal biomarkers, and intestinal ultrasound, and a much greater emphasis on close objective monitoring of inflammation rather than simply asking whether a patient feels better. These advances are enormously positive for patients, but they also increase the expertise and infrastructure required to deliver good care.
The workforce problem is the foundation of everything else
At the moment, there simply aren’t enough specialist gastroenterologists, colorectal surgeons with IBD expertise, IBD nurses, dietitians with IBD training and psychologists to service the population outside major cities. This shortage has been shown again and again in Australian studies as a key cause behind delayed diagnoses, patients travelling hours for basic reviews, and clinicians managing complex biologic therapies without the multidisciplinary support that metropolitan units have access to. Isolation compounds these issues.
We have proposed a statewide action plan built around expanding specialist gastroenterologists, nursing and allied health positions, embedding telehealth properly rather than treating it as a stopgap, establishing formal multidisciplinary teams even in smaller centres, and building statewide clinical networks, research and clinical databases so we can actually measure what is happening to patients over time. None of this is radical. Most of it reflects what IBD standards of care already recommend; the problem has always been implementation in places with thin workforce pipelines and stretched budgets.
Why staffing alone won’t fix this
Workforce shortages are a global problem, and health systems cannot simply keep scaling up staff-heavy models of care indefinitely. What’s also needed is genuine investment in patient co-care, digital tools that let people manage parts of their disease between appointments, and models that treat consumers as partners rather than passive recipients of care. Expanding the workforce buys time; it does not by itself solve a system that lacks the data and accountability to know whether care is actually improving.
Australia has already demonstrated that there is appetite for nationally consistent IBD care. The Australian IBD Standards have provided a framework for what good care should look like for many years, while national audit and advocacy work has demonstrated substantial variation in how services are organised. The next step is moving from recommended standards to measurable standards of care, supported by the data infrastructure to determine whether they are being achieved.
Creating clinical registry data for all hospitals, including resource-stretched hospitals such as many of those in regional areas is important. We cannot meaningfully close an equity gap if we cannot reliably measure where the gaps are. We need to know whether patients in regional areas experience longer diagnostic delays, more steroid exposure, more emergency presentations, or poorer access to advanced therapies than patients in metropolitan centres. We also need to know whether interventions designed to address these problems actually improve outcomes.
Health literacy and disadvantage remain the hardest problems
The parts of this puzzle I find most challenging to resolve are health literacy and socioeconomic disadvantage. Workforce and infrastructure gaps are, at least in principle, fixable with funding and well-executed healthcare planning. Helping a patient in a low-income regional household understand why they need regular monitoring, afford the time off work for specialist appointments, or navigate a health system that assumes a level of literacy and digital access they may not have, is a slower and more personal challenge. It requires community-based nursing, culturally appropriate education, and genuinely local relationships, not just a Zoom line to a city hospital. This is where I think regional health systems, done well, can match their metropolitan counterparts: smaller communities can build trust and continuity that larger, more transactional services often struggle to replicate.
Patient empowerment therefore needs to be considered a core component of IBD care rather than an optional extra. Patients need to understand their disease, recognise deterioration, know when to seek help and have access to reliable information about treatment. This becomes particularly important when specialist appointments may be months apart or require a full day’s travel.
Taking care of our younger generation
Another vulnerable group that deserves particular attention is paediatric patients. Paediatric management of IBD is centralised to a handful of centres across the country. IBD often begins during adolescence or early adulthood, yet this is also a period when patients are moving between schools, universities, employment, family homes and healthcare systems. In regional areas, there may be no dedicated transition service at all. Delivering quality of care closer to home will reduce the burden of healthcare delivery and interactions for these patients and their family, enabling them to develop into the person they were destined to be.
What this means beyond Australia
Regional and rural health inequity in chronic disease is not an Australian peculiarity. Any country with a large land area, a concentrated specialist workforce, and public reporting gaps in chronic disease management will recognise this pattern. The lesson from Tasmania is not that the state is uniquely disadvantaged, but that a small, well-defined health system can be a useful proving ground for solutions: better data infrastructure, embedded telehealth, genuine multidisciplinary teams and patient empowerment tools, before they are scaled nationally. If we can get equitable IBD care right in a place like Tasmania, we will have a genuine template for tackling chronic disease inequity across the board.
The goal should not be to make regional IBD care identical to metropolitan care. It should be to make the standard of care equivalent. Geography should determine whether a patient has a longer journey to an appointment, not whether they have access to the treatments, monitoring, expertise and multidisciplinary support that modern IBD care demands.
Australia has an opportunity to build an IBD system that matches the sophistication of the treatments now available to patients. That means investing not only in more specialists, but in specialist nurses, allied health, local diagnostic capability, digital health, clinical registries, research infrastructure and patient education. The treatments have changed dramatically. Our model of delivering care needs to catch up.
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