Inflammatory bowel disease an impending national health crisis, study reveals

A new study on the burden of inflammatory bowel disease (IBD) in New Zealand shows we have one of the highest rates of IBD in the world and it is growing at an alarming rate. The study was released today by the Crohn’s & Colitis New Zealand Charitable Trust (CCNZ).
Crohn’s disease and ulcerative colitis (known collectively as IBD) are serious, debilitating, lifelong autoimmune diseases:
• onset is typically in early adulthood
• approximately 20 percent of those affected are children
• IBD is unpredictable in disease course and severity
• symptoms include intense abdominal pain, diarrhoea, rectal
bleeding and fatigue
• it is treatable, but there is currently no cure
• IBD affects an estimated 20,792 New Zealanders, and
• it costs the country around $245m a year.
Speaking at the launch of the new study CCNZ Co-Chair and founder Brian Poole QSM, said there was an urgent need for better data, greater understanding, and earlier diagnosis of the disease, which has profound and often humiliating and isolating impacts on patients.
“IBD primarily strikes young people in the prime of their lives, meaning they find themselves facing a lifetime of living with a devastating illness, largely hidden from the outside world, as well as coping with the challenges, side effects and risks of medications and surgical treatments,” said Mr Poole.
He said the study provides more than sufficient evidence for nationwide research and data collection on IBD, the establishment of treatment guidelines as part of a NZ Standard of Care for IBD, and improved awareness and understanding among GPs and district health boards, as well as in the workplace.
“The study shows that IBD symptoms are frequently misinterpreted, and patients are often not diagnosed and treated until symptoms are very severe and the disease is well advanced.
“In fact 60 percent of patients are diagnosed in A&E with out-ofcontrol pain and inflammation. Delay in diagnosis often results in more radical, invasive, and costly interventions, including surgery, lengthy hospitalisations, and expensive immunosuppressive
medications,” Mr Poole said.
Hutt DHB Gastroenterologist and CCNZ Co-Chair Dr Richard Stein said the lack of good data on IBD incidence and the fact that the diseases sometimes take months or even years to be diagnosed underscores the importance of more research and awareness.
“The estimated incidence (1 in every 227) puts IBD on a par with Type 1 diabetes, but it’s likely that the actual number of cases is even higher. Whichever way you look at it, the incidence, the impact of these diseases on people’s lives, and the rate of increase are alarming.
Most importantly, we need to remember that when we talk about statistics, those statistics are our co-workers, our neighbours, and our families.”
Economist Suzanne Snively authored the report with input from workshops with a steering group of gastroenterologists, IBD nurses, patients, psychologists, and analysts. She said the absence of national data on IBD made the project of analysing the burden of the disease extremely challenging.
“The physical, economic and psychosocial impacts of living with IBD are also very difficult to measure, but we have enough evidence to indicate that a lot of people are not getting the right care, the best treatment soon enough, or the emotional support they need to cope
with the disease.
“There is a clear imperative for developing a nationwide evidence base on IBD and research to develop a New Zealand Standard of Care for IBD, as has been established recently in Australia and Canada,” said Ms Snively.
The new report has been independently undertaken by Crohn’s & Colitis New Zealand Charitable Trust with an unrestricted educational grant from Janssen, a company of Johnson & Johnson.