Luke Simpkins (Cowan, Liberal Party) Share this | Link to this | Hansard source

I take this opportunity to speak of my concern for those of my constituents who are afflicted with the insidious disease type 1 diabetes. As a father there is nothing more important to me than the health and safety of my children. I would of course do anything I could for them. I am grateful therefore that they do not have any problems or health concerns. Although my wider family has had our fair share of health concerns over the years, that has not been the case for my children, nor for my niece or nephews. I am very happy about that. It is of course the nature of being an elected representative that constituents who are not so fortunate bring to us their circumstances. As a father and with my feelings regarding my own children, it is not hard to empathise with parents of sick children. Recently I had two visits by mothers whose children have type 1 diabetes.

As I found out, the cause of type 1 or juvenile diabetes, also known as insulin dependent diabetes mellitus, is unknown. The pancreas of a person with IDDM does not make any insulin at all. Without insulin, the glucose remains in the bloodstream at high levels. The body recognises the dilemma and tries to provide the cells with other sources of fuel, such as stored fats. Extensive fat burning can release by-products called ketones, which are dangerous in high amounts. The cause is unknown, as is a cure.

What can be achieved is management including self-monitoring of the blood sugar levels, testing of urine to test high levels of ketones and, of course, injecting insulin. When Raelene Dewar came to see me with her young daughter Madison, they showed me the insulin pump device that their private health insurance paid for. That was $8,500 well spent. Madison programs in what she eats together with information on her blood sugar levels. The pump then delivers insulin directly through a cannular, also known as a set. Testing of Madison is done by Raelene Dewar or her husband at 10.30 pm before going to bed and again at 3 am.

That is the typical life of families whose child is a type 1 diabetic. It is a family burden because they do not want to lose their son or daughter to the disease and they do not want their child to suffer from the range of outcomes of unmanaged diabetes such as cardiovascular disease, a wide range of nerve related and circulation problems and even damage to the retina, which can result in blindness. Given the risks involved, the family members will get up in the middle of the night to do the checks and either go back to bed if the levels are okay or remain up to do more checks or to take the action required.

Alexis Scott told me of her teenage son and how she would have to check his blood every night at 10 pm, midnight and 3 am as a minimum. It could be as often as every 20 minutes if his levels were bad. Management of diabetes is often harder to control when he is sick. She said that the two ways of testing are through the unreliable urine testing and by ketone blood strips. Each box costs $24 and she thinks they should be on the PBS. The target range is five to 10 mmol per litre. If the ketone level is too high, they have to take insulin or risk kidney damage. If the reading is too low, they have to have carbs, such as bread or milk, or death could follow.

The high-maintenance nature of her son’s illness has resulted in a lack of understanding by at least one teacher at his high school. The teacher suggested that his diabetes could be managed just by eating properly, showing that she did not understand the difference between type 1 and type 2 diabetes. She also raised the issues of the disposal of needles by diabetics at the Princess Margaret Hospital for Children, and the policy of having no sugar at the cafeteria or shop, which makes it difficult for those with an emergency.

These points help with our insight into the life of those with type 1 diabetes. This is not a normal life, but it is for those who have to live with type 1 diabetes in the family. These families pray or hope for a cure to the disease or the discovery of a treatment that will restore normalcy to their lives. They want their lives back but, above all, they want to know that their child will be safe and able to enjoy their life. I said before that I had empathy for these families, but I cannot know what it is like to have to live their lives. I do, however, appreciate that, but for providence, it could have been my children or any of our children that became the victims of this insidious disease.

It is also important to remember that type 1 diabetes is beyond the control of the victim. It is not about bad eating or a lack of physical activity. They do not really know how it is caused. There has been some suggestion that breastfeeding a child for more than three months can be a factor in reducing the incidence of the disease. What is clear is that research is needed, and while progress is being made I would certainly urge the NHMRC to strongly focus on type 1 diabetes and do all that can be done to solve this great mystery. (Time expired)