Laurie Ferguson (Werriwa, Australian Labor Party) Share this | Hansard source

I certainly concede the member for Boothby's claim that the current minister has shown a greater inclination to consultation than her predecessor and has certainly tackled a major debacle. However, in this matter she has not been consultative. I understand there have been no discussions with the Australasian Society for Inborn Errors of Metabolism, ASIEM, with the Metabolic Dietary Disorders Association or with the PKU in New South Wales. These are the lead organisations and they heard nothing about this decision in advance of it being made.

I come to this issue with a degree of personal involvement. My office manager Linda Perrett, her son Kaeland and husband, Jamie, have endured years of a very traumatic lifestyle through Kaeland's suffering from classic MSUD, or maple syrup urine disease. Kaeland is now 18 years old and can only take five grams of protein per day. This means that special foods have to be used every day, despite the claims of expertise by the Prime Minister. This is the concrete reality the family faces. When Kaeland is unwell, his symptoms can range from a head cold, viral infection to broken bones. He then needs to go onto a sick regimen, which is no protein—that is the regimen—but he still needs to consume 3,000 calories a day. It is impossible to achieve that without using special low protein foods, which the grant is aimed at financing. Kaeland is an example of what people suffer in the real world—not the quick, from-the-hip responses in question time. In the real world he has been hospitalised approximately 20 times during his life, including five trips to intensive care. Obviously, the situation is that if the family cannot afford special foods he will have even more admissions. His brain will become more and more damaged. It is also possible that he will go into a coma and die.

One has to question not only the factual material put forward by the Prime Minister but the economic realities for this country if more and more people are hospitalised, go into comas and have brain damage. What is the eventual weighing of the cost in regard to this decision? It is not as though hundreds of millions of dollars are involved. We are talking about 980-odd people. The figures have been given to the parliament, and it is a very mean-minded decision that has been made.

It might be that more foods are available in supermarkets, but they are not low enough in protein for the daily consumption of these people. They need to be used in conjunction with special foods, not as a replacement for them. In the case of my electoral manager, the family needs to spend $300 to $400 per month on special foods. That is, as I say, the concrete reality out there. These materials are only available from three suppliers. A premade loaf of bread from one of the suppliers is $10 and a box of cereal is $14.95. A member of an organisation that Linda is in has paid $28 for grated cheese and $20 for sliced cheese plus $40 delivery in recent days. These foods are not subsidised by the PBS, as they are special medical foods, not prescription products.

In conclusion, we have a group of people who have decided to battle on in support of their children. I have seen the number of absences Linda has had occasioned through this issue in her family. I have seen the impact on the child's education and the amount of time she has had to put into attending schools, arranging school transfer and moving home to go to a more suitable smaller school in a more rural setting than where she was previously. This family has made a decision to help this child in life and, quite frankly, even with this subsidy, it is a very strong financial cost to the family.

I believe that strong consideration should be given to reversing this decision. I would hope it was based on misinformation to the Prime Minister rather than deliberate misleading of the parliament. Quite clearly, last week's supposed facts—about how things had allegedly been totally replaced by these alternative products in recent days and therefore we do not need to worry about it any longer, and how all the people enduring it and all the families directly affected are wrong and do not know what they are talking about—are erroneous, and this decision should be reversed very urgently.

Debate adjourned.

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