Karen McNamara (Dobell, Liberal Party) Share this | Link to this | Hansard source

I move:

That this House notes that:

(1) May is Crohn's and Colitis month, designated to raise awareness of these life long gastrointestinal disorders that commonly present themselves in children, adolescents and adults;

(2) the conditions, collectively known as Inflammatory Bowel Disease (IBD), are an emerging global disease, with Australia having one of the highest rates of prevalence in the world;

(3) IBD is a chronic and largely hidden disease affecting approximately 1 in 250 people aged 5 to 49 years nationally;

(4) more than 75,000 Australians live with these conditions, with numbers expected to increase to more than 100,000 by 2022;

(5) IBD cannot be cured as yet, but it can be managed effectively, especially with the use of medications to control the abnormal inflammatory response; and

(6) the Government has acknowledged the need to improve the quality and consistency of IBD care in Australia and has announced an historic $500,000 matched funding agreement to kick start the Crohn's & Colitis Australia programme.

I am proud to bring this motion to the House, and I thank the member for Macarthur for seconding the motion. One of the biggest lessons you can learn in life is never to assume. While on the outside it may seem that a person is healthy, this can be deceiving as to what is really going on with a personal situation. This is proven to be more than true in regard to those suffering from Crohn's disease. Many people would not be aware of, or understand, what Crohn's disease is. It is not spoken about much because, like many diseases affecting the intestines and bowels, it is seen as a 'toilet disease', but it is far more than a toilet disease.

With May being Crohn's and colitis month, this is an opportunity to raise awareness of these lifelong gastrointestinal disorders that commonly present themselves in children, adolescents and young adults. Crohn's disease and colitis are the major types of inflammatory bowel disease. The conditions of Crohn's and colitis are collectively known as inflammatory bowel disease, IBD. IBDs are long-term diseases that cause visible inflammation of the digestive tract, but each has its distinct pattern which can lead to different problems.

IBD is an emerging global disease, with Australia having one of the highest rates of prevalence in the world. IBD is a chronic and largely hidden disease affecting approximately one in 250 people aged from five to 49 years old nationally. This means a large part of our population are silently living with a chronic condition that is causing much internal suffering while on the outside they may appear normal. With more than 75,000 Australians living with IBD, numbers are expected to increase to more than 100,000 by 2022.

The main distinguishing features of Crohn's disease are the location and severity of the inflammation. The inflammation can involve any part of the digestive tract, though it most commonly affects the intestines. Unlike colitis, Crohn's disease affects all layers of the intestinal wall, not just the lining. The symptoms are largely unpredictable, with a significant variation in the pattern of symptoms experienced by individual patients. Generally, the symptoms of Crohn's and colitis are similar, including stomach pains, diarrhoea, sudden urgency to go to the toilet, tiredness, weight loss and loss of appetite. Some individuals experience fever, mouth ulcers, nausea, vomiting and swelling around the rectum, and other parts of the body may become affected too, causing rashes, joint pain and inflammation.

Inflammation is a normal part of the body's self-defence system. With Crohn's disease, it is believed that the immune system of certain individuals overreacts to environmental factors, attacking healthy tissue and causing inflammation and ulceration. There is no way of telling who will be affected, but those with a family history are more likely to develop Crohn's, and it is usually identified in younger people. The relapsing and chronic nature of the disorder has broader impacts on a person's emotional, physical and social wellbeing. While there is no cure for Crohn's disease, the disease can be managed through the use of medications to control the abnormal inflammation, which allows the intestinal tissue to heal and relieves the symptoms.

The particular plight of those suffering from Crohn's disease was brought to my attention recently when I was contacted by Mr Dieter Wolf, who spoke about the suffering of his daughter Amanda. Amanda has been dealing with Crohn's for most of her life. Amanda has endured so much pain since she was diagnosed over 22 years ago and has experienced several life-threatening attacks—the most recent being last June, when Amanda spent four weeks in an induced coma. Her plight is even more heartbreaking because Amanda is a mum, and her children have had to watch her battle this crippling disease.

Through Crohn’s and Colitis Australia, Amanda and Dieter have signed up for the Great Wall of China Challenge 2016, which will be held in October 2016. The 11-day trek will be CCA's biggest fundraiser, and its goal is to raise $50,000. Every dollar raised by participants will go to continue the work of the CCA in providing research grants, raising awareness and providing support programs. I wish Amanda and Dieter all the best with this amazing fundraising effort, and I commend Amanda for her tenacity in making a difference and creating awareness by her fundraising efforts to find a cure for this insidious disease.

Last December, the government announced an historic $500,000 matched-funding agreement to kick-start the CCA program. I do hope that those suffering will have some answers on how to deal with their disease and that one day it will be cured. I commend this motion to the House.

Michael Sukkar (Deakin, Liberal Party) Share this | Link to this | Hansard source

Is the motion seconded?

Russell Matheson (Macarthur, Liberal Party) Share this | Link to this | Hansard source

I second the motion.

Jill Hall (Shortland, Australian Labor Party) Share this | Link to this | Hansard source

I want to speak about Crohn's disease and put my support for this motion on the record. I thank the member for Dobell for bringing it before the House.

I emphasise that May is Crohn's and Colitis month and we, as a parliament, will need to raise and discuss this issue in May. Crohn's and colitis—or IBD and gastrointestinal diseases—cause a lot of pain and have enormous impact on people's lives. The member for Dobell went through a lot of the symptoms, treatments and impacts of Crohn's and colitis, but I think it is very important to recognise that this is a disease that impacts on a person's life every day.

In a previous life, I worked as a rehabilitation counsellor and had some clients who suffered from Crohn's disease. Not only did it impact on their general health and wellbeing but it also impacted on their ability to find and maintain suitable employment, because it is quite a debilitating disease. As the member for Dobell rightly pointed out, there is no cure for it. It can be controlled, but, even when it is being controlled, there are acute periods. It does not disappear; it is just managed. People with living with Crohn's and colitis take medication, modify their diet and look at the whole of their life to be able to live an effective life.

I would like to see more money put into research in relation to Crohn's. It is quite common and it has such an impact on a person's life. When you have inflammation of the bowel—actually, it is the intestinal system; it can be anywhere from the mouth to the anus—where it is in the digestive system can determine the impact and the severity of Crohn's disease.

People are usually diagnosed when they are under 30, and that correlates with a young woman I know. She went to school with my daughter. When she left school, she immediately travelled overseas and took a gap year in the UK. That gap year became two years. She worked there for a considerable amount of time, came back and then went back over to Ireland. She became very, very ill. She could not eat anything; she lost a phenomenal amount of weight. It was very difficult to find out exactly what was wrong. She came home, was unemployed for quite a period of time and moved back home with her parents. Eventually, she was diagnosed with Crohn's disease. She is living a relatively normal life, but she is not the young, healthy person that she was prior to the diagnosis. She looks great. People would not know, by simply looking at her, that she has Crohn's disease. But, like all of the 75,000 Australians who are living with the condition, it does have an enormous impact on her and on her life.

I would like to see us embrace this disease and work harder not only to manage it but also to find a cure. I think the way that that will be brought about is if governments invest more in research so that we can really make an impact on the lives of people living with Crohn's disease.

Russell Matheson (Macarthur, Liberal Party) Share this | Link to this | Hansard source

I would like to start by thanking my good friend the member for Dobell for moving this important motion on Crohn's disease and colitis, which are chronic gastrointestinal disorders collectively known as inflammatory bowel disease. As the member for Dobell noted, Australia has one of the highest incidence rates of IBD in the world, with more than 75,000 Australians living with these conditions, and this number is expected to increase by 25 per cent within the next eight years.

Added to the increasing prevalence of IBD, the medical community are reporting that conditions are becoming more severe and more complex and are being diagnosed in more and more very young patients. Last year, Rebekah Wilson from Kentlyn in my electorate of Macarthur bravely made the decision to talk to a local newspaper, the Macarthur Chronicle, about the devastating impacts of contracting Crohn's disease at 19 years of age and her subsequent struggle to understand and control her condition.

Crohn's disease can involve any part of the gastrointestinal tract from the mouth to the anus but most commonly affects the small intestine and/or the colon. There are many areas of healthy intestine between areas of diseased intestine. Within a diseased section, Crohn's disease can affect all layers of the intestinal wall—that is, not just the lining. This can lead to the development of complications that are specific to this condition, such as intestinal obstruction or narrowing of the intestinal wall, abscesses and swollen lumps or thickened skin occurring just outside the anus, abnormal channels connecting different loops of the intestine to itself or other body organs, and malabsorption and malnutrition. It is suspected in people who have been experiencing symptoms such as abdominal pain, diarrhoea and weight loss that have lasted for weeks or months.

Because there is no single test that can establish the diagnosis of Crohn's disease with certainty, and because Crohn's disease often mimics other conditions, it takes time and several investigations to arrive at the correct diagnosis. Bek explained to my office last week that when she was first diagnosed there was virtually no information, and even her GP was not entirely sure how to appropriately advise and properly treat her.

Bek described what she says was a three-year battle to come to terms with her chronic illness and the dramatic lifestyle changes she was forced to make. When IBD is not effectively managed or in remission, inflammation in the colon, rectum and gastrointestinal tract can become so severe that sufferers need to be hospitalised and may require surgery. Bek said that on one occasion when her bowels were inflamed during a particularly nasty disease flare she was forced to spend eight nights in hospital, but ended up discharging herself because there had been no improvement to her symptoms.

One of the most challenging aspects of IBD is the conditions are largely unpredictable with significant variation in the degree and pattern of symptoms affecting each patient. Treatment for IBD is mostly trial and error, and for Bek this means that at times all she can do is curl up in a ball and pray that the pain will pass. Here is Bek describing it in her own words how it feels to have Crohn's disease:

Anything I ate I was in a huge amount of pain in my stomach to the point where I basically stopped eating. I didn't want to go to sleep because I thought my body was failing me and I wasn't going to wake up.

According to Bek, in the years immediately following her diagnosis, the relapsing and chronic nature of her disorder drove her to the point where she all but gave up hope.

More recently, however, she's been part of a trial for a drug called Vedolizumab, which is designed to reduce inflammation by inhibiting the adhesion of T-lymphocytes to gastrointestinal tissues. This treatment requires Bek to have an intravenous infusion in hospital, and the induction regimen is followed by infusions every eight weeks. Reassuringly, Bek said that after 14 weeks she is starting to see results, but she is also about to get married and is looking to have children in the not too distant future and is concerned about the potential side effects. It is absolutely heartbreaking to think that someone like Bek, who is in the prime of her life and has so much to look forward to, is forced to take such risks in her search for a remedy for this awful condition.

That is why I commend this motion and the government's recognition that we need to improve the quality and consistency of IBD care in Australia by providing $500,000 in matched funding to kick-start a national awareness campaign for Crohn's and Colitis Awareness Month in May. We can all play a part in raising awareness and helping to find a cure for sufferers of IBD. There is lots and lots of information available on the Crohn's and Colitis Australia website about how to help, such as hosting an event, getting involved in sponsored fitness challenges or simply making a donation to find a cure.

Chris Hayes (Fowler, Australian Labor Party) Share this | Link to this | Hansard source

I have spoken on previous occasions about Crohn's disease and inflammatory bowel diseases. I thank the member for bringing this forward. These diseases are characterised by chronic and recurrent inflammation of the small and large intestine and, believe it or not, affect over 30,000 Australians. It is a very debilitating disease and it has significant impacts on sufferers, particularly young people and children. Sadly, there is no cure and the only way to ease the effects of the disease is to have ongoing medical intervention and treatment, which only targets the symptoms. That is why the issue of research into this is absolutely vital. The more we can raise awareness of Crohn's disease the better it is in terms of attracting the necessary dollars required to undertake research in this space.

The impact of the disease on young people's lives is, quite frankly, crippling. Children affected by the disease regularly have large periods of time off school. The discomfort of the disease that they suffer is largely in the form of lethargy due to the lack of iron. I know this because my grandson, whom I have spoken about in this place on many occasions, is not only on the autism spectrum but, 18 months to two years ago, he was diagnosed with Crohn's disease. The effects on young Nathaniel, in year 8, really impact on his daily life. During recess at school, for instance, he will regularly take himself to the sick bay and will go to sleep because he is just so tired. He finds it difficult to participate in many of the events at school, particularly physical activities. Also, he finds it particularly hard to explain to other students what it is he suffers, because this is not something that you can easily talk about.

Parents of children suffering from Crohn's disease, including my daughter Elizabeth in this case, also find it pretty stressful in their daily lives because they have to manage the disease and they are constantly anticipating the next flare-up. Often parents have to leave their jobs or exhaust all their leave entitlements to cope with the sporadic nature of the symptoms of this disease.

I would like to take a little time to acknowledge the extremely hard work by dedicated people working in this space of research, particularly Dr Vincent Ho, Director of the GI Motility Disorders Unit at Western Sydney University, and his colleagues. I also acknowledge the Crohn's awareness Australia team. The committee is: Josie Furfaro, Sam Romeo, Angelo Romeo, Melina Gerace and Cathy Gullo. They do a heck of a lot of work in increasing the awareness of this disease out there in the community, particularly as it does affect so many. Regrettably, most of the people affected are very much silent sufferers.

I also acknowledge the dedication and commitment to raising awareness of Crohn's disease, especially, of the research unit at Western Sydney University. I acknowledge particularly the dean of the university's medical school, Professor Annemarie Hennessy, who has certainly been a stalwart supporter of research in this space.

The Ingham Institute of Applied Medical Research, a not-for-profit organisation located in Liverpool in south-western Sydney, is a unique collaboration between Western Sydney University, UNSW Australia and the South Western Sydney Local Health District. It also conducts research in this space. The institute's clinical trials group, housed at the Liverpool Hospital, involves a wide range of professionals and medical researchers from other supporting hospitals in conducting research on diseases affecting the community.

Last October, the institute held the latest of its forums on ongoing clinical trials in Crohn's disease. The forum brought together medical practitioners, researchers, parents and sufferers, as well as pharmaceutical companies helping to accelerate the development of new medicines and clinical procedures, to assist sufferers of Crohn's disease.

I congratulate the mover of this motion, and I thank all those who work in this space, who do well to ensure that the calls for research and assistance of people suffering with rare diseases such as Crohn's disease do not go unanswered.

Tony Zappia (Makin, Australian Labor Party, Shadow Parliamentary Secretary for Manufacturing) Share this | Link to this | Hansard source

I am pleased follow the member for Fowler in this discussion. As the motion quite rightly points out, and as other speakers have pointed out, there are some 75,000 people across Australia currently who suffer from Crohn's disease, ulcerative colitis or inflammatory bowel disease of some sort or another. More concerning is the fact that, by the year 2022, that figure is projected to rise to some 100,000. I also note that there have been a couple of reports as to the cost of this disease to society. A PricewaterhouseCoopers report suggested that productivity losses alone are worth $380 million, and there is an additional $2.7 billion of costs to Australian society that arise from inflammatory bowel disease. I also note that a few years ago—I think it was in 2005—there was an Access Economics report which also put the direct cost at something like $500 million, at a time when it was only an estimated 60,000 Australians who suffered from the illness, but it also put the total costs, in one form or another, as perhaps running into the billions of dollars for Australian society as a whole.

I refer to the issue of cost for this reason. It is important to understand that this illness is costing Australia a considerable amount of funds, and that is why, in turn, it is important to look at what we can do to try to reduce the incidence of it or to better manage it, and that in turn would suggest that we need to not only spend more money in the direct service of health support systems but also into research.

I am particularly concerned that many of the sufferers of IBD are young people. In fact, it is sometimes in their teenage years that people are diagnosed with this illness. That, in turn, inhibits their ability to get a proper education. When you have this kind of illness, the chances are that either you absent yourself from school on many occasions because you feel embarrassed to go to school, it being one of those illnesses that is hard to manage, or you lose your ability to focus on your education, which, again, must inevitably have an impact on those young people. It is that loss that, to me, we should never forget. It means that young people with all sorts of potential perhaps never reach their potential because they simply cannot apply themselves to their education.

The costs that I refer to include lost earnings, absenteeism in the workplace, premature death, the loss of tax revenue to government as a result of people not being in work or not attending work as often as they might, and even the carer costs for people who need more intensive care as a result of these conditions. Of course, there are also the psychological costs, because there is no doubt that, when a person has a chronic disease of one kind or another, inevitably they need counselling and psychological treatment. It would be debilitating and demoralising, and, in the end, people become very desperate. So any kind of support we can give them is important. I note that, whilst there are some medications available, there is no cure for the illnesses. Two-thirds to three-quarters of Crohn's disease sufferers ultimately end up having some kind of surgery at some point in their lives. About one-third of ulcerative colitis patients also end up requiring surgery at some point in their lives.

Last year, there was an interim Australian standards quality of care program guideline released by Crohn's and Colitis Australia which puts together a framework for how we can better manage people who suffer from these illnesses. The framework talks about high-quality clinical care, locally delivered services, individually structured programs, improved patient support and education, better data collection and use, and nutrition and counselling advice. The bottom line is that we cannot cure these diseases, but at least we can offer a whole range of services which help patients better manage the conditions that they have. Among the health services that these people access are X-rays, pathology services, endoscopies, colonoscopies, ultrasound, diagnostic imaging and all of the medications that they need to take. The reality is that, in comparison with other illnesses, we do not spend anywhere near as much money on Crohn's and colitis illnesses as we should be spending. We need to spend it in direct support and in more research so that we can ultimately create a better quality of life for sufferers.

Debate adjourned.