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Thursday, 5 December 2013
Page: 1832


Mr BYRNE (Holt) (16:56): Thank you, member for Tangney. I wish to speak for the time remaining about an insidious condition which affects many Australians—about 1.5 million—and a number of our young. That condition is diabetes.

Recently, what I would like to call a community champion or a local legend, Mairi Anne Macartney, mother of type-1 diabetes sufferer Tess Macartney, came into my office and spoke to me about the stresses and strains as a parent of a loved one that has type-1 diabetes. For the House's information, type-1 diabetes is a lifelong autoimmune condition that usually occurs in childhood but can be diagnosed at any age. It affects over 122,000 people in Australia alone, and over 1,800 Australians are diagnosed with type-1 diabetes each year. It is one of the most chronic conditions in children, and currently there is no cure.

Mairi Anne asked me to provide a snapshot of what it is like to be a parent of a child with diabetes each day. With Tess, for example, each day starts at 7 am for the Macartney household. When Mairi Anne wakes, her first thoughts are about Tess, who is now 15 years old, having done the test when she was 10. Tess has had diabetes for five years. When Mairi Anne wakes, she is worried. She is worried about whether or not Tess has died overnight from DIBS—which is death-in-bed syndrome—because, with young people with type-1 diabetes, the body's glucose level can drop quite dramatically overnight, mostly without warning. This is a horrifying thought that Mairi Anne lives with each night and has asked me to raise in this place.

Once Tess is up, Mairi Anne has to weigh and measure out her food. Every carbohydrate must be taken into consideration, so that means cereal, bread, milk, fruit—every carbohydrate. On top of that, they have to determine how much insulin Tess needs for each snack, meal and drink. For everything Tess eats, whether she is at home, at school, at a party or at a friend's place, this process has to take place. It is an arduous process and it has certainly taken its toll on Tess. Meanwhile, at school, Tess has no school nurse. No one has been trained in diabetes management to look after Tess. Mairi Anne has arranged a management plan at the school, which is a good school, but there is always the risk as to whether Tess has remembered the amount of insulin to take.

Every day is a challenge for a parent of a child with type-1 diabetes. There is a constant worry about the future and the welfare of the child—and, as I said, there is no cure. To that effect, I welcome the Abbott government's recent funding announcement of $35 million towards finding a cure for this condition. Despite these fears, the Macartney family remain positive on a daily basis and are strong advocates in trying to obtain better outcomes for all families experiencing type-1 diabetes.

As I said, Tess was diagnosed five years ago. Mairi Anne's response to that was to set up a group called My-T1 Connect, and that is connecting families with information and support to explain what happens to children with type-1 diabetes and to provide the support to carers. My-T1 Connect started with four families and has now grown to support 157 families in four years—it is a great group. It is led by Mairi Anne Macartney, Kerrie Trevitt and Shannon Macpherson. They are working on three projects: the first one is to ensure new essential health aids like Omnipod Insulin Therapy are made more accessible to diabetes families; the second project is to ensure a ministerial order is created for diabetes management for schools in Victoria—there is one for anaphylaxis, there needs to be one for diabetes; and the third project is to do a fundraising walk in March 2014.

The SPEAKER: It being 5 pm, the debate is interrupted.

House adjourned at 17:00