Chris Hayes (Fowler, Australian Labor Party) Share 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.

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