Jill Hall (Shortland, Australian Labor Party) Share this | Hansard source

I move:

That this House:

(1) condemns the Government's decision to cut, without any warning and consultation, all funding from the Inborn Error of Metabolism (IEM) Programme that provides for families and carers with children who suffer from Phenylketonuria (PKU) ;

(2) acknowledges that sufferers of PKU require a vital expensive medically prescribed diet, supplemented by the funding, to avoid brain damage, seizures, liver failure, coma and in some cases death; and

(3) calls on the Government to reinstate the funding to the IEM program.

There is no action that more graphically demonstrates the Abbott government's disregard for battling Australians than its decision to cut the grant to those people who are living with inborn error metabolism, or IEM, disorder. There is no action that more graphically shows how much contempt they have for Australian people.

This grant was cut without consultation and without research into the impact it would have on those people who relied on the grant. It shows the general approach to health of the Abbott government. It was a quiet cut; it was sneaked in. There was no consultation, no consultation with anyone. The first people knew about it was when they trolled through the budget and found it had gone.

Living with this disorder can be very expensive. People who have IEM have a very expensive prescribed diet. Many families can afford this diet through the funding provided to them through the grant. This disorder is an inability for the body to process proteins—that is in a very simplistic form. Without the right kind of diet, people living with IEM can have brain damage, seizures, liver failure, coma and, in some cases, death. It is a vitally important grant that has been given to families in the past and provides $256.75 to the 904 people who have the disease. I have never seen anything quite so bloody-minded as this act.

The Prime Minister showed a lack of understanding when he said in parliament that there is more access to regular foods that will deal with the diet of people who have protein conditions. He also said that there is more medication available. That just shows he does not get it, he does not understand. This is a life-threatening disease and the people who have it really rely on the grant money to purchase the right kinds of food. I thought I would share with the House a letter from the constituent. In it she says:

I am godmother to a gorgeous, vibrant, intelligent 4 year old girl, Violet, who loves My Little Pony video games and dancing. She also happens to suffer from the rare genetic disorder … PKU.

She goes on talk about how the liver does not produce amino acids and says how reliant the family is on the grant. The constraints of the diet, she points out, require speciality foods. She has given me an example of the types of foods required: Fate flour, $7.50 for 500 grams used to make bread and pizza, Loprofin rice $10 for 500 grams, Loprofin pasta $10 for 500 grams and Loprofin mixture used as a flour for cooking $7 per 500 grams—that is, really expensive when compared with standard foods.

This is a very bloody-minded act. This act was taken without consultation. I implore the government to reverse this act because it is having an impact on a small group of people, people who relied on the grant to sustain a suitable diet. If the Prime Minister has a heart, he should open his heart and reinstate that grant. He should not go through with his budget bloody-mindedness.

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