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Monday, 28 February 2011
Page: 1813


Mr RIPOLL (9:29 PM) —Tonight I want to raise the awareness of the parliament of a terrible disease that affects tens of thousands of Australians but receives almost no recognition in the community. It is massively debilitating, is vastly misunderstood and, unfortunately, receives no state or federal government funding for its only support group and virtually no research funding, even though in any year it is more prevalent than epilepsy, multiple sclerosis, rheumatoid arthritis, eczema and schizophrenia. This disease is called Crohn’s disease. Crohn’s disease causes inflammation of the full thickness of the bowel wall and may involve any part of the digestive tract. Most frequently it affects the ileum—the lower part of the small bowel—the large bowel or both. Symptoms may include abdominal pain, diarrhoea, vomiting or weight loss. The disease may also cause symptoms outside the intestinal tract, such as skin rashes, inflammation of the eyes, tiredness, arthritis and an inability to concentrate.

Along with ulcerative colitis, Crohn’s disease is one of two diseases that fall under the term ‘inflammatory bowel disease’—not to be confused with irritable bowel syndrome. Despite a great deal of research, the cause of Crohn’s disease is unknown. Some scientists believe it may be due to a defect in the body’s immune system, while others believe that bacteria or even viruses may play some role, but it is unknown. There is no evidence that Crohn’s disease is contagious in any way, and so no fear as there seems to be no evidence at all of that for any number of people. In fact, relatives of people with IBD have only a slightly greater risk of developing either disease, the reasons for which are also unknown but perhaps due to some family traits. Stress or diet is not thought to cause IBD. Both diseases are more common in the Western world than in other parts of the world. Again, it remains a mystery, and little is known about the cause of this particularly bad disease.

More than 61,000 people in Australia have IBD. Of those, 28,000 suffer specifically from Crohn’s disease. Around 776 new cases of Crohn’s disease are diagnosed each year. Crohn’s disease is more prevalent among females, and ulcerative colitis if more prevalent among men. The peak age at onset is between 15 and 40 years, although diagnosis can occur at any age. These are very young people. They are at the prime of their lives. They are debilitated by a terrible disease that impacts not only their lives but also the lives of their families. As I said earlier, in any one year inflammatory bowel disease is more prevalent than epilepsy, multiple sclerosis, rheumatoid arthritis, eczema and schizophrenia. While those terrible conditions and diseases receive some serious funding, attention and research—for good reason—it is unfortunate that those who suffer from IBD and from Crohn’s disease specifically receive almost none of that.

The diagnosis of Crohn’s disease or ulcerative colitis is sometimes delayed as the same symptoms can occur with other diseases. It is usually necessary to exclude diseases such as bowel infections and irritable bowel syndrome in the first place. Blood tests are useful for looking for anaemia and measuring the severity of inflammation. They also can detect vitamin or mineral deficiencies. A faeces specimen may be required to exclude infection. Most people require an examination of part of the bowel, either by direct inspection through a colonoscopy or a sigmoidoscopy or through the mouth by gastroscopy, or by X-rays, including CT scans and barium small bowel series, whereby a dye is swallowed and X-rays are taken. I say that to put on the record the discomfort people who have to be even examined for these diseases go through. These are not just one-off tests. There is no one-off test that can reliably diagnose all the causes of IBD. Many people require ongoing and multiple tests throughout their whole life.

This all costs a great deal of money and a great deal of time. The pain and suffering these people go through is enormous, not only to themselves personally and to their families but also to the community. Treatment is simply not easy. Because IBD is a chronic condition, many people will need to take medications for long periods of time, either to bring the disease under control or to maintain remission once the symptoms have disappeared. Stopping the medication can result in a flare-up of symptoms or lead to other problems, such as relapse—sometimes even months later. At present the medications used to treat inflammation in IBD belong to five main categories: aminosalicylates, corticosteroids, immunomodulators, biological agents and antibiotics. All of these are expensive, all of these are difficult for the person who needs to take them and all of them involve a lot of medical care and attention.

So, what is the government doing? What are we doing about this? A little while ago there were a couple of drugs that could treat the conditions that were subsidised through the PBS. The most recent was Adalimumab, announced in 2008 by Minister Roxon, a vital drug that is needed to at least relieve some of the symptoms and pain that people suffer. Advice is also being provided through Job Access, with business being eligible for the Employment Assistance Fund if modifications are required within the workplace to accommodate any employee with IBD. All this is of course welcome, and a step forward, but in the end in reality it does very little in terms of the real impact for those who suffer from these very debilitating diseases and all the difficulties that are associated with Crohn’s and IBD. Sufferers are not alone, though—they have friends, family and people around them.

The main representative body for this disease is Crohn’s and Colitis Australia, CCA. The Australian Crohn’s and Colitis Association, the ACCA, was first established by Angela McAvoy in 1985, soon after she was diagnosed with Crohn’s disease. Angela formed the ACCA, now known as CCA, after discovering there were no support services available in Australia. Angela led the organisation as a volunteer for 21 years before the first CEO was employed in 2006—so, quite recently. CCA have been making life more liveable for more than 61,000 Australians across the country. It is their mission to support Crohn’s disease and ulcerative colitis, collectively termed IBD, with a focus on confidential support programs, education, advocacy, counselling, increasing awareness and raising funds for research and support. All the services they provide are free of charge. The reason they do fundraising is that they do not receive any funding, either from state governments or the federal government.

Last year the inaugural World IBD Day was held on 19 May. The date coincided with National Crohn’s and Colitis Awareness Week, which was held 16 to 22 May. The purpose of the day was to bring to international attention the needs of people living with IBD, articulated with a unified, worldwide voice. I think it is important that somebody in this place raises these issues. I am sure there is equal concern across all parties in this place, and in the other chamber, that the people who suffer this most debilitating of diseases should receive more recognition and acknowledgement, not just in individual terms but as a collective, and should receive more financial support for research and for other lifesaving drugs.

There is not just a personal cost that these people face; there is also a cost to the community. In 2007 Access Economics released a report into IBD. It found that that economic cost of IBD in Australia is $2.7 billion. This includes a total financial cost of $500 million and a net cost of lost wellbeing of $2.2 billion. Loss of productivity accounts for $266 million, more than half the total financial cost. The health system costs are what I would say is a mere $79 million, but it is still a huge cost. Carer costs are nearly $24 million a year. The loss of revenue and government payments total $91 million. The loss of productivity includes absenteeism, workplace separation, early retirement and premature death. All in all it paints a picture of people who suffer a chronic disease, a debilitating disease, who need support and have little recognition in the workplace, little understanding, little sympathy and little acknowledgement of what it is that they are actually suffering through.

I know two young people who suffer this disease—one quite young, one young. The cost to their personal lives is enormous. On a number of occasions they have had to spend long periods in hospital. The number of operations and amount of surgery they have had to endure is beyond what most people would expect to have to endure in a lifetime, let alone in a short few years.

The greatest challenge faced by many sufferers in the community is awareness. People just do not understand what they are going through. Many people associate Crohn’s disease with irritable bowel syndrome, which it is not. There is often a stigma associated with this as well. My challenge, and my challenge for the parliament, is to increase the recognition and understanding of this very chronic and serious disease. I ask colleagues to work with me to help to form a parliamentary friendship group around this disease and to seek more funding to try and help people who are long-sufferers. (Time expired)