New Zealand has the third worst rate of inflammatory bowel disease in the world and it is growing at an alarming rate, a new study has found.
The study, launched this morning in Parliament, estimated 20,792 New Zealanders were affected by the disease. That's a rate of one in every 227 people which puts the disease on par with type 1 diabetes.
Canada and the USA have a higher prevalence than New Zealand with one in 154 and one in 201 respectively. In Australia the rate is one in 303 and in Europe it is one in 333.
In New Zealand, during the 10 years from 2003 to 2013, the number of new cases increased by about 81 per cent indicating the number of Kiwis with the disease would double by 2026.
Hutt Valley District Health Board gastroenterologist and Crohn's and Colitis New Zealand co-chairman Dr Richard Stein said there was a lack of good data on the number of people who lived with the disease and he believed the estimates were conservative.
Inflammatory bowel disease is a term which encompasses both Crohn's disease and ulcerative colitis. They are chronic, lifelong, incurable diseases that are unpredictable in diagnosis, disease course and treatment.
Symptoms include abdominal pain, diarrhoea, rectal bleeding and weight loss.
"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," Stein said.
He said there was not enough awareness or understanding of the disease which most people managed with medication but often resulted in the need for surgery.
"We have to deal with parents getting the news their children have the disease, young people spending long times in hospital, concerns about fertility, of being on medication when pregnant and whether they are going to have the energy to raise children. People lose their jobs - there's not the understanding in the work place."
Crohn's and Colitis New Zealand founder and co-chairman Brian Poole, QSM, said there was an urgent need for better data, greater understanding, and earlier diagnosis of the disease, which had a profound and often humiliating and isolating impact 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 Poole.
He said the study provided sufficient evidence for nationwide research and data collection on the disease, the establishment of treatment guidelines as part of a NZ Standard of Care and improved awareness and understanding among GPs and health boards, as well as in the workplace.
"The study shows that 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 per cent of patients are diagnosed in A&E with out-of-control pain and inflammation. Delay in diagnosis often results in more radical, invasive, and costly interventions, including surgery, lengthy hospitalisations, and expensive immunosuppressive medications", he said.
Twelve-year-old Nicole Thornton, who spoke at this morning's launch, was diagnosed with Crohn's disease when she was 8 and this year presented a petition to Parliament calling for those with medical conditions like hers to have a legal right to use toilets owned by businesses.
"I remember even when I was 6, I always seemed to have these terrible tummy pains and I was always stuck in the bathroom. I remember once I was supposed to be going to karate, and I should have been excited about that. But I was just slumped in the back of the car feeling so weak and tired and sick that I didn't even want to try and drag myself out. I just thought this is how I am. This is my life. I couldn't remember ever feeling any different."
The report recommended a working group be set up to help ensure appropriate and accessible care is available to those with the disease around the nation, undertake research to help form a New Zealand standard of care for patients and set up a national registry and develop information campaigns to give people a better understanding of the disease.
About Inflammatory bowel disease
• One in 227 New Zealanders has the disease.
• Onset is usually between 15 and 35.
• About 20 per cent of those affected are children.
• It costs the country about $245 million a year.