Almost 180,000 Australians are living with inflammatory bowel disease today and many are “frequent flyers” of ED services, but funding for research and patient support lags behind other chronic conditions, new figures suggest.

The IBD State of the Nation report released by Crohn’s & Colitis Australia [link here] shows the condition impacts 179,420 Australians, with over 91,000 experiencing active disease. Prevalence was predicted to rise to 200,000 in the next 10 years, with the growth expected to outpace that of Canada, the UK and New Zealand.

The report stated that patients with IBD were among the most frequent users of the hospital system, often facing prolonged delays in diagnosis. More than one in three patients had symptoms for over a year before diagnosis, with about one in 10 experiencing symptoms for more than five years.

Further, 41% of patients said achieving remission took longer than five years, which the report attributed to inconsistent access to multidisciplinary teams, as well as variation in clinical practice and challenges in the timely access to drugs.

Meanwhile, the total economic impact of IBD – which included the health, economic and social costs of IBD – was projected to reach $7.8 billion in 2025, with the total burden expected to be $77.9 billion over the period from 2025-2035.

Despite the high rates of health service utilisation – with a higher rate of hospitalisation and ED presentation than even cancer – and the direct and indirect health costs, IBD received no funding for patient support and the least amount of research funding of any chronic condition over the past 10 years.

“These data raise questions of whether IBD is being ‘crowded out’ by other chronic conditions, which get more policy focus and funding by virtue of their patient volumes,” the report said.

Crohn’s & Colitis Australia, which commissioned the report, called for a national IBD registry, a specific fund for IBD research in the Medical Research Future Fund, a national IBD clinical standard and a living well with IBD program.

Other priorities included improving access to multidisciplinary team care through the development of a national, virtual network of multidisciplinary teams and improving access to therapies by engaging the IBD community with regulators.

Larger burden

Gastroenterologist Associate Professor Greg Moore, chair of the scientific, medical and quality of care committee of Crohn’s & Colitis Australia, said the report revealed a much larger burden than previously thought and underscored the urgent need for earlier diagnosis and improved access to specialist care.

“The numbers add up – it costs more to do nothing,” he told the limbic.

“Rolling out the initiatives outlined in the report actually save the Australian taxpayer. Healthcare dollars will be saved from the unnecessary presentations to emergency, unnecessary surgery for complications, as well as the associated mental health and economic impacts on the patients and their carers.

“We all know that working in this space just how completely socially isolating and debilitating undertreated IBD can be. We all have those stories of patients, who if we had of met them at or near diagnosis, their life course would have been different – life-altering complications that they may have suffered through undertreatment, under-awareness and not having access to specialised IBD care.”

Associate Professor Moore said most chronic disease approaches focused on an older patient group or were managed through a GP framework such as diabetes, whereas IBD – with its younger age of onset compared to other conditions and lifelong management – required longer-term specialist care.

“The healthcare system is not set up that well for that longer term care,” he said.

“For us, the biggest thing the government could do that’s achievable now is a clinical care standard, which basically will define what is quality of care in IBD and how all levels of healthcare delivery should be designed.

“…having an IBD psychologist as part of your IBD service, an IBD dietitian, funded IBD nurses with a helpline… we know that multidisciplinary care is critical and if it’s in a national clinical care standard, then that is something that has to be implemented.

“Just having a helpline with a nurse makes an enormous difference in preventing complications and unplanned admissions. But it’s a real struggle for a lot of smaller centres or other areas to get funding for all of these other elements of the team.”