Karen Andrews (McPherson, Liberal Party) Share this | Link to this | Hansard source

The week from 13 to 20 March is Coeliac Awareness Week, and this provides an opportunity to highlight to the community the prevalence, symptoms and management of this disease. Coeliac disease is a hereditary disease where the immune system reacts abnormally to gluten, a protein found in wheat, barley and oats, resulting in changes to the lining of the small intestine where the villi become inflamed and flattened. This in turn leads to malabsorption of nutrients, as the surface area of the bowel is significantly reduced by the flattening of the villi.

Coeliac disease is hereditary—a genetic predisposition needs to be present for the disease to develop. The prevalence of coeliac disease varies across different population groups due to its hereditary component. It is uncommon in Africa, Japan and China but is much more common in Ireland, the United States and Italy. It is estimated that coeliac disease affects one in 100 Australians. Based on current population figures, this means that there are about 226,000 sufferers in Australia, although the Royal Australian College of General Practitioners puts the figure somewhat higher at 250,000.

The exact figure is not known precisely, but it is estimated that approximately 70 per cent of sufferers are not diagnosed, continue on throughout their lives unaware that they have coeliac disease and therefore continue with a gluten-containing diet that is most likely posing risks to their health. In Australia, underdiagnosis means that there are about 160,000 Australians who have coeliac disease but do not yet know it.

Why is coeliac disease so often undiagnosed? There are a number of reasons for this, including the fact that it is not easy to diagnose. Blood tests are usually used as an initial screening tool followed by a small bowel biopsy to confirm the diagnosis. Whilst there are other methods with varying reliability, the small bowel biopsy is the gold standard for diagnosis. Also, the symptoms can be vague and many people with coeliac disease can be asymptomatic. It can be particularly difficult to diagnose in children. As it is often difficult for the child to describe their symptoms or the symptoms are unspecific—for example, the child says, 'I've got a stomach ache,' or 'I'm tired'—the medical practitioner may not proceed with the serology to screen for coeliac disease. Then, of course, there is the cost involved in the blood tests and biopsy, the long waiting times at public hospitals and the limited number of gastroenterologists and especially paediatric gastroenterologists in private practice.

The diagnosis or detection rate in Australia must be increased because of long-term consequences of the disease, such as osteoporosis, poor nutrition—and in children this can manifest itself as lack of proper development such as short stature—and also an increased risk of certain types of cancer. As proper treatment with a correct gluten-free diet can prevent or reverse many of these illnesses, timely diagnosis is essential.

In Finland, coeliac disease has been recognised for some time as a chronic disease and considerable work has been done to increase the detection rate. This has been done by increased training of health personnel as well as increased screening for those known to be at risk of developing the disease. I believe that similar measures need to be instigated here in Australia.

I have recently spoken to the executive officer of Coeliac Queensland about the cost impact of coeliac disease and about our mutual concerns in this area. The executive officer, Cathy Di Bella, was certainly very forthcoming in her views in representing the members of the coeliac community.

To date there has not been a recognised study in Australia of the actual cost to society of coeliac disease. There was a four-year study of coeliac disease patients in Minnesota in the United States that recorded the direct medical costs associated with the disease and compared these with a control group that did not have coeliac disease. The study found that there were higher patient costs and higher total costs for those with coeliac disease compared to the control group. However, that study did not take into account lost productivity through days at work lost, higher food costs or long-term health costs. A proper study of the costs to society of coeliac disease needs to be undertaken, and I call on the government to commission such a study as a priority. I also call on the government to provide proper support for the early detection of coeliac disease and to actively support existing organisations such as Coeliac Queensland to raise awareness of this chronic disease in the community, particularly in rural areas. With early detection and strict adherence to a gluten-free diet the effects of the disease can be reduced and potentially reversed, and appropriate steps should be taken to raise awareness. (Time expired)