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

I move:

That this House:

(1) notes that:

(a) chronic gastroenterological disorders affect the lives of hundreds of thousands of Australians;

(b) inflammatory bowel diseases affect 61,000 people, including 28,000 suffering from Crohn's disease and 33,000 with ulcerative colitis;

(c) inflammatory bowel disease often develops between the ages of 15 and 30, but it can start at any age; increasingly it is being seen in children;

(d) it is estimated that 120,000 Australians have the functional gut motility disorder gastroparesis; and

(e) gastroenterological disorders require urgent attention; and

(2) calls on the Government to:

(a) address funding to patient support, medical research and treatment in gastroenterological disorders; and

(b) consider the call by the University of Western Sydney to establish an Australian Translational Gastroenterology Centre to:

  (i) facilitate community awareness of gastroenterological disorders across Australia through community workshops, seminars and symposiums;

  (ii) promote support for gastrointestinal disorders at hospitals and primary health networks across Australia;

  (iii) develop a gut tissue bank for research;

  (iv) initiate and maintain a patient registry of gastrointestinal disorders; and

  (v) support local strategies to enhance treatment of gastrointestinal disorders in rural and remote areas and in Indigenous populations.

Through this motion, I seek to raise awareness of gastrointestinal disorders, including Crohn's disease, all of them commonly known as 'gut disorders'. These are diseases of which many people are largely unaware, but, for the hundreds of thousands of Australians who suffer these illnesses, and for their families, they are very real. The people affected generally suffer in silence due to the perceived stigma associated with these disorders that obviously can also involve the disturbance of basic bodily functions. Crohn's disease causes inflammation of the full thickness of the bowel wall and can occur in any part of the gastrointestinal tract.

I have become acutely aware of Crohn's disease ever since my grandson Nathaniel was diagnosed with it two years ago. Crohn's, along with being on the autism spectrum, is a lot for this 13-year-old to handle.

Inflammatory bowel disease often develops in people between the ages of 15 to 30, but it is increasingly presenting itself in children. Essentially, gastrointestinal or GI motility is responsible for digestion—the movement of food from the mouth through the oesophagus, stomach and intestines and bowel, all of which can feature in gut disorders. The GI motility clinic at the University of Western Sydney regularly sees children and young people with non-specific gastrointestinal symptoms, such as nausea, vomiting and abdominal pain. The effects, particularly on young people, can be quite debilitating, impacting their education and stopping young people from fully enjoying social activities during their formative years, as well as affecting their prospects of employment.

The annual cost of managing inflammatory bowel disease is substantial. A recent study conducted by PricewaterhouseCoopers estimated that the total cost to the community is in the vicinity of $100 million annually. Much of the cost can be attributed to delayed diagnosis as well of suboptimal medical therapy, whereas the loss of economic productivity attributable to inflammatory bowel disease in Australia is estimated to be over $360 million.

I would like to pay tribute to the researchers, clinicians and advocates who are working hard to increase awareness of these diseases in the community and who are helping sufferers of these debilitating diseases. In particular, I acknowledge Dr Vincent Ho, Director of the GI Motility Disorders Unit at the University of Western Sydney, along with his colleagues Elie Hammam and Jennifer Greer; and, from Crohn's Awareness Australia, Josie Furfaro, Sam Romeo, Angelo Romeo, Melina Gerace and Cathy Gullo. I also take the time to acknowledge the Dean of the School of Medicine at the University of Western Sydney, Professor Annemarie Hennessy, for her strong support for research and treatment of gut disorders.

I would like to share a poem written by a very special young woman in my electorate, Ashley Allum, herself a sufferer of a disorder known as gastroparesis, but she is a very committed advocate for fellow gut-disorder sufferers. She wrote:

Over three years ago my life had changed,

Just like that, my diet had to be drastically rearranged.

Felt like a cold that comes on real quick,

Just woke up one morning feeling incredibly sick.

No words can describe how this feels,

When all I can eat are very small meals.

To go from feeling healthy to oh so sick the next.

This unknown illness seems to have everyone completely perplexed.

Pain, nausea and fullness too,

These are the words that describe my illness to you.

Others less fortunate than Ashley often go undiagnosed for years, as there is a distinct lack of awareness about chronic gastroenterological conditions, even in parts of the medical community.

I praise the work conducted by UWS and I support their quest to establish a patient registry as well as a centre that would serve as a gut-tissue bank for the purposes of research. Such a centre would allow national collaborative research between clinicians and scientists on this issue.

Craig Kelly (Hughes, Liberal Party) Share this | Link to this | Hansard source

I thank the member for Fowler for raising this important issue. Is the motion seconded?

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

I second the motion. I thank the member for Fowler for bringing this really important motion to the parliament. I must say that I am disappointed that there is no member from the other side speaking on this motion. Maybe they did not understand quite what it was about but this illness or this gut disorder affects hundreds of thousands of Australians and it impacts on their life in so many different ways.

The member for Fowler has a grandson who has Crohn's disease. Crohn's disease is a very debilitating disease. People do not know how they will feel from one day to the next. I think it is really important that we as a parliament get our heads around diseases such as Crohn's disease, colitis and all the other gastrointestinal diseases that affect people's lives. A person living with a gastrointestinal disease has to struggle each day to live a seminormal life. For instance, they struggle with their education. It impacts on their ability to study and achieve at school because in so many instances they miss an inordinate amount of school. They have trouble participating in sport, once again because they do not know how they are going to feel from one day to the next. It really does affect them.

As far as work is concerned, people that have Crohn's disease or have any severe or significant gastrointestinal disorder miss work. I have had constituents come and talk to me about the impact that it has on their employment and the way they have had to struggle to maintain employment or to actually have any sort of employment whatsoever. It even impacts upon a person's social life. I had a constituent visit me a couple of weeks ago. She had to cancel a previous appointment. She said: 'I am terribly sorry but I could not come last week because I have Crohn's disease and I was having a really bad day. I could not leave the house.' Many of these bowel conditions actually impact on a person's ability to do anything.

Crohn's disease is a common inflammatory bowel disease. Crohn's disease causes inflammation in the bowels of people who are living with it. The inflammation can be anywhere along the digestive tract. Just imagine how this impacts on a person's ability to lead a normal life. The symptoms can be abdominal pain, diarrhoea—which is one of the effects that people find most difficult to live with—fever and weight loss. It can affect people of all ages and I think the member for Fowler touched on that aspect of it. Ulcerative colitis is a type of inflammation of the bowel and it develops in the large intestine. Symptoms include, once again, diarrhoea and internal bleeding—all things that make a person nervous about leaving home, all symptoms and effects that really impact upon a person's life. There are many other gastrointestinal disorders, such as diverticulitis, but they all impact on a person.

More research is needed. We need to get behind it in this House. I am pleased to see Dr Gillespie here in the House and I know that he is an expert in this area. I am pleased to see the government is supporting the motion of the member for Fowler because it is an excellent motion.

David Gillespie (Lyne, National Party) Share this | Link to this | Hansard source

I rise to speak about this very important issue of inflammatory bowel disease. The two common forms are Crohn's disease and ulcerative colitis. I would like to say that I support this motion in general, although I might modify some of the subpoints and bring to the House the fact that some of these issues are already being addressed. In general, I think this is an excellent motion and deserves support. I congratulate the member for Fowler and the member for Shortland for saying what they have said.

Unfortunately, inflammatory bowel disease is a common disease. It is just that people do not talk about it when you see them at the pub or at a cafe. You do not walk up and say, 'I have got this chronic condition with my guts that leads to a great deal of morbidity and a lot of drug treatment, and often surgery.' It is not a thing that you talk about publicly. But it is out there and I have spent the last couple of decades of my medical life treating people with this distressing condition, which fortunately now has much more effective treatments available.

The federal government and previous governments before this coalition government have supported and continue to support the treatment of inflammatory bowel disease through the Medicare Benefits Schedule, which supports rebates for endoscopic procedures for assessment by specialist surgeons and gastroenterologists and through a general practitioner who are all part of the treatment team. It also supports the Pharmaceutical Benefits Scheme and the specialised drugs and the biological agents, which have been game changers in the treatment of inflammatory bowel disease—namely, infliximab and adalimumab. Also, the radiological investigations now are so much more advanced such as PillCams, which are microscopic cameras that you swallow, and MRIs that define fistulas and abscesses, which are an ugly part of Crohn's disease.

The motion calls on support for a couple of initiatives. The University of Western Sydney is establishing a translational gastroenterology centre. That seems like a good idea, although there are a lot of other research institutions already trying to do translational research. The concept of focusing it in one new dedicated centre deserves consideration. Like all things, it costs money. At the moment, our role is to manage money wisely. There is also a tissue bank, for the genetics of inflammatory bowel disease, and a patient registry of inflammatory bowel disease has been organised out of Melbourne. Many practitioners do report to it, particularly in the paediatrics space. If there is some way of coordinating all these data collection points into an Australia-wide databank, that would existentially be a great idea because it is these tissue banks and genetic banks that the researchers can look at to pick apart the puzzle of inflammatory bowel disease. There are many genes involved in inflammatory bowel disease, not just one, and tissue banks and data accumulation are gold for researchers. Many countries, for example in Scandinavia, have huge nationalised databanks. We have a hybrid system where we have private practitioners treating it, we have academic centres treating it, we have salaried people treating it, we have surgeons treating it, we have gastroenterologists treating it and we have immunologists treating it. If we put all that data together, it can only help the relentless quest for knowledge about what genes actually trigger it and what cofactors trigger those genes to activate and manifest the disease in people.

There are many good points in this motion. It is rare that I get something that is right up my historical alley. I have worked in the corridors of power in other areas, and it is refreshing to see that people in this House are taking an interest in a specific disease that is not really sexy. As I said, most people keep this disease at home, or just between their doctors and themselves. I support the motion.

Andrew Laming (Bowman, Liberal Party) Share this | Link to this | Hansard source

It is always a pleasure to speak on health related matters in this chamber. We need to remember the health sector is now the largest employer in the country, the fastest growing area of social spending and in particular, as we start to recognise diseases such GIT-related conditions—something that has not been a health priority—we need to look more carefully at whether we are giving appropriate emphasis to them. Of course speaking after a gastrointestinal surgeon is a bit of a challenge, but the eye surgeon will give it a red-hot go. I should say that through my medical training I missed a couple of days of lectures, and I probably missed the lecture on gut and that may have left a permanent scar on my medical training. But I do not think I would ever swap my profession for Mr Gillespie's—nonetheless, adding to his speech will be challenging.

In essence, of course we support issues like those raised in this motion, but we are also mindful that we do have, in the end, to rely on a research system that is based on merit and we need to be able to assess the quality of research and fund it accordingly. Any move where we begin to carve out money and commit it to particular disease groups does have some effect by redirecting money from potentially more productive causes. In the end we can only rely on experts to tell us the research that has been proposed by those who have the highest impact in the field, those who have the strongest records in the area and those who are doing the most promising research. That is one area. The other one, of course, is just looking after patients. Gastrointestinal disease is something no-one wants to talk about. Self-evidently, there are 120,000 people suffering functional gut motility disorders in this country but how many people have you met in the street who have come up and told you exactly what their symptoms are? It is very hard to get men, in particular, and older men, to talk about this area of medicine.

My training from the 1980s was predominantly about deciphering whether gastrointestinal disorders were just functional problems—sometimes we are born with a gut that causes us problems—but increasingly we understand the role of diet, we understand the role of behaviour, we understand the role of genetics and we understand the specific immunological impacts of gastrointestinal disease. Let us not forget that we have already seen a Nobel Prize won by an Australian who identified that one of the most severe gastrointestinal concerns was related to a bacteria, after decades of our simply trying to treat it with neutralising compounds and antacids. We have not talked about gastric reflux yet, but an even larger cohort of Australians suffer that and they have been offered very few options either through cutting edge research or investment in patient support. Traditionally this parliament has said that patient support is very much a state-related issue. Well, times are changing and previous governments have seen a greater focus on federal preventative health care. Now the reality is that the feds are in the game, and once you are there you cannot get out of it. We do need to be able to have a specific discussion with leading teaching hospitals around the country about what support we are giving to patients with chronic disease.

I do believe that 10 years from now we will look back on the way we have supported people with gastrointestinal conditions and say that we did not do well enough and that providing just a small amount of additional support would have had an incredible impact. The question of impact is a matter for local providers. With a sense of subsidiary, I want to see those decisions made by the primary health care networks. I want to see their performance in managing gastrointestinal disease measured. How can we reduce the recurrent admission of people with gastrointestinal disease, save hospitals money, liberate some resources and refund preventive health care? I do not want to state the obvious, but to fund our health system, like the rest of our social system, we do not just rely on tax—we borrow from overseas, from China and the Middle East, to fund our hospital system. We know that is not sustainable and that has been the core of intense debate in this place. To get the health system right we have to have every lever pushing towards the most efficient hospital and public health system we can build, and we do not have that yet. We are not even close to that yet. Before we start proposing additional spending, I want those who think about public health to confine their thoughts to how we save the money to invest in this area. When a motion like this comes to this chamber I ask where is the money going to come from. The answer has to be more efficient acute care—not paying ridiculous amounts of money to have people in public hospitals when they can be perfectly managed by highly skilled general practitioners. Let us come right back to that GP-centred system. They need to be given all the power they can have to look after their gastrointestinal patients with the resources, the money and the time that that they deserve.

Craig Kelly (Hughes, Liberal Party) Share this | Link to this | Hansard source

The time allotted for this debate has expired. The debate is adjourned and the resumption of the debate will be made an order of the day for the next sitting.