Impending National Health Crisis Inflammatory Bowel Disease
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% 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 hosted in Parliament today by Hon Trevor Mallard, 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 DHBs, 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-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”, said Mr Poole.
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.”
Representing the 20% of people with IBD who are diagnosed in childhood was 12 year old school girl Nicole Thornton, who learned that she had Crohn’s disease when she was 8 years old. Talking about what it has meant to be a kid with IBD, she said the worst part was before she was diagnosed.
“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.
Nicole said it made a huge difference to be able to talk to other kids with IBD about their experiences and she wanted to see more understanding from people about what it’s like to live with IBD. Earlier this year Nicole presented a petition to Parliament asking for better toilet assess for people with medical conditions. It is currently under consideration by the Health Select Committee.
Detective Rebecca “Becs” Parker who works in the Counties Manukau Family Violence Unit, is also happy to “tell it like it is.” Becs was diagnosed with Crohn’s disease 8 years ago at the age of 19, but only after ending up in hospital in acute pain after suffering 18 months of often excruciating symptoms.
“After all the pain and surgery and having to have a temporary ileostomy bag, I’m over being self-conscious about it. New Zealand has one of the highest rates of Crohn’s in the world and we need to start talking about it so that people understand what this illness is about and patients can get better treatment sooner.”
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.
Other speakers at the event were Hon Trevor Mallard MP, IBD Specialist Nurse Megan Mackay, and President of the New Zealand Society of Gastroenterologists Associate Professor Michael Schultz from University of Otago.
A summary of key findings and recommendations from the report is attached as an appendix to this release.
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.
The report can be viewed online at; https://issuu.com/crohnsandcolitisnz/docs/271017_master_formatted_bod_report_?e=31600274/54845559
Summary of key findings:
• The incidence of IBD is New Zealand is among the world’s highest and it is growing at an alarming rate.
• The annual cost to New Zealand of IBD is estimated to be $245 million and growing.
• There is clear evidence that the current model of care for IBD patients is inadequate, inconsistent and inequitable.
• Particular concern exists around the lengthy diagnostic timeline and evident geographic inconsistencies stemming from a lack of specialist medical knowledge in regions outside of the main centres to enable earlier intervention.
• IBD is poorly understood by national health planners and this will have increasingly significant consequences as the number of IBD patients continues to rise.
• There is little public and media discussion around IBD due in part to the challenging nature of some symptoms of the disease.
What is needed:
• Development of a national IBD registry
• Formal classification of IBD as a Long-Term Condition
• Development of a New Zealand Standard of Care for IBD patients, reflecting a proactive model of care that addresses current shortcomings in diagnosis, access to treatment and standards of care
• Measures to ensure adequate nationwide availability of and access to IBD specialists, including:
- IBD gastroenterologists
- Trained IBD nurses
- Psychosocial therapists and support services with IBD experience and training
• Development of up-to-date, comprehensive information on IBD including diagnostic and treatment guidelines for dissemination across the health sector, in particular to GPs, DHBs, and national health planners
• A national information campaign on the key facts about IBD, to promote greater understanding, care and support for IBD patients
Recommended next steps:
1. Establish an IBD National Care Working Group to address the implications of this study and the implementation of appropriate and accessible care nationwide.
2. Undertake research to develop guidelines for a New Zealand Standard of Care for IBD Patients through the following:
• construction of a nation-wide evidence base
• a clinical trial investigating the impact of the timing and use of pharmaceutical interventions
• compilation of evidence to support an exercise to calculate DALYs and QALYs for IBD as a basis for affording IBD the priority given by the Ministry of Health to other long-term conditions
• specification of the pathways of care for IBD that maximise patient wellbeing while reducing direct health care costs, indirect and economic costs.
3. Information and communication
• a communication plan to develop the knowledge base about IBD across DHBs and Primary Health Organisations to ensure early and accurate diagnosis of IBD followed by appropriate treatment
• information for primary care practitioners about who to approach for advice and where to send their patients for appropriate expert treatment, irrespective of where they practise in New Zealand
• a national information campaign on the key facts about IBD, to promote greater understanding, care and support for IBD patients.