House debates

Wednesday, 9 September 2015

Constituency Statements

Maranoa Electorate: Inborn Error of Metabolism

9:33 am

Photo of Bruce ScottBruce Scott (Maranoa, Deputy-Speaker) Share this | Hansard source

I rise to speak about a very passionate family in my electorate and about a condition that is probably little known to many Australians, and that is Inborn Error of Metabolism, which is commonly referred to as IEM. This family contacted me about the health of their two young daughters aged four months and two years. I am pleased to say that the coalition government will continue with the worthy program that supports this family and many other families who have children who have this condition known as IEM.

The human body is a complex thing, but what happens when your body cannot quickly turn food into energy, the very process that sustains life and your body?

Imagine your shock when you learn that your newborn baby suffers from this rare genetic disorder. If it is not treated correctly this disorder can lead to brain damage, liver failure, seizures and, in some cases, death. This confronting scenario is being faced by Matt and Brooke Dwan, in Warwick in my electorate, with their two beautiful daughters being diagnosed with IEM condition soon after their birth. IEM is rare. It is a disorder that many people have not heard of. Matt and Brooke had not heard of it at the start of this journey, but it threatens their children's lives. Brooke is a driven athlete and a Paralympian. A couple of months ago she wrote me an impassioned letter about her daughter's health. As part of the IEM treatment a strict low-protein diet must be maintained. The federal government provides a program to support children and adults to buy these specialised food products. This program was due to finish by 31 December this year.

I have always been a strong advocate for better health outcomes and support for people in my community, and I am sure every member of this parliament is similarly driven. The tyranny of distance in Maranoa means IEM patients and their families are burdened with the additional costs of sourcing vital, specialised low-protein foods not available in most supermarkets—and certainly not in those in remote parts of my electorate of Maranoa. Geographic isolation inflates these costs, so I made urgent representation to the federal Minister for Health so we could continue this important government subsidy into the future. Without the federal government's $11.7 million subsidy program to support patients' access to this vital and expensive medically prescribed diet, Maranoa families struggle to afford the specialised food that ensures the long-term health of their children suffering from this rare disease. After hearing Brooke's emotional story and other similar stories from my constituents, I am very pleased to say that the coalition government is set to continue this worthy support program for children and adults suffering from IEM disorders.

Comments

No comments