Ms Catherine King (Ballarat, Australian Labor Party, Shadow Minister for Health) Share this | Hansard source

I acknowledge the contribution of the member for Boothby—I acknowledge the hard task he has been given, very much at the last minute, because there were no government speakers listed on this motion on Inborn Error of Metabolism Program funding. I commend him for at least having a go. No decision highlights just how cruel and frankly pathetic this government is when it comes to health cuts as much as this decision—a decision literally made overnight with no consultation and no warning to cut a vital subsidy to some 985 families across the country whose children are suffering from a rare condition known as inborn error of metabolism. Managing this conditions requires a lifelong commitment to a rigid diet of carefully weighed synthetic, low-protein formulas and foods that are often very expensive to buy—pasta and rice at $10 a packet, and a block of cheese, after shipping, can cost $68.

In 2001 the Howard government began paying a small monthly grant to help offset the extraordinary costs these families were bearing from just feeding their children. This was by no means a budget breaker—today it amounts to just over $250 a month, or $3,000 a year, for a total cost to the health budget of $3 million a year; $12 million over the course of the forward estimates. Without any warning or consultation, with no discussion, families across Australia received a letter from the Department of Health to say they were losing $3,000. There are some families who have two or more children who suffer from this disorder. It just shows how embarrassed the government is that it has not had speakers on the list, and the member for Boothby was obviously asked by either the minister's office or the whip's office to speak on this issue—and good on him for having a go. Faced with a choice between defending the decision or saying nothing, that is what they have done—said nothing. No wonder. I have no doubt that members opposite have been made well aware of the anger, betrayal and distress that this decision has caused hundreds of families, and the emails and letters will be flooding into their offices the same as they are into mine. From one GP I received these comments:

As a clinician in the public health system I understand the need to consider where resources are directed. However, I am angered by decisions such as this one that seem to defy any sound reasoning. I feel that this decision could only have been arrived at by people with no understanding of the seriousness of the biology and subsequent social/economic consequences of this disease and its treatments.

A constituent of mine, Heidi, writes:

I can only consume 10g of protein a day as set by my dietitian. As a result, I cannot eat most dairy, nuts, legumes, meat, fish and grains. My diet consists of fruits and vegetables that are low in phenylalanine and specially formulated low protein products.

As a teacher's aide on a fairly low income, I feel very anxious at the release of this budget measure as I am certain that I will not be able to afford the low protein products …

I know from letters and emails forwarded to me that Heidi is far from alone in her distress. This was brought home to me in a meeting that I held last week with associations representing many of these families. I met with Kymberley, who is having the extraordinary job of managing to weigh every single ingredient that she consumes, as she is pregnant, in order to make sure that the child she is carrying does not develop a disability. What an incredible thing to suddenly get a letter from the department saying, 'Guess what, the money you rely on to feed yourself and to grow this baby is now being removed.'

The Prime Minister's response that you can just somehow use rice milk or cornflour is pathetic. I hope the Prime Minister never goes on Master Chef. I do not know if he has ever tried to cook with cornflour, but it is not a substitute for these low protein flours. The fact is that these foods cannot just be bought in the supermarket aisles. They have to be ordered from specialist food suppliers. I quote again from a letter:

I really believe Mr Abbott is just misinformed. I am hoping once he realises this he can reverse this decision. Products are not more widely available and we only have 3 suppliers where we can buy the low or no protein products which are expensive and have delivery fees.

Rice milk and cornflour are not going to help us. He needs these low or no protein products, without these I simply cannot feed my son. He won't develop and grow normally.

I wonder how the Treasurer can reconcile this pathetic small-minded measure with the miniscule savings it will bring to the budget bottom line.

Once again, I call on the Abbott government to reverse this decision. This is a small amount of money within the context of the entire health portfolio and the entire budget. It is a pathetic decision and, frankly, one which they are rightly being condemned for. I hope they consider the representations of many members and reverse it. (Time expired)

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