Andrew Southcott (Boothby, Liberal Party) Share this | Hansard source

I thank the member for Shortland for bringing the issue of inborn errors of metabolism to the House's attention and would like to respond to this private members motion. Firstly, to explain what inborn errors of metabolism are, phenylketonuria would be one of the best known ones. It is picked up through the newborn screening test and involves an enzyme deficiency, which means that people cannot metabolise amino acids, the building blocks of proteins, but a number of others fall into this category. This means that from the time they are born, they need a very specific diet, often a low-protein diet.

To explain a little bit about the government's rationale, the government has put onto the PBS a number of medications, costing about $19½ million a year, to assist with conditions, including amino acid formulas, vitamins and other supplements. The vast majority of low-protein foods are available from supermarkets, and there is also a very limited range of specialist low-protein foods which can be ordered directly from manufacturers. The specialist manufacturers supply products such as baking mixes, rice, biscuits and some dairy replacements. Most fruits and vegetables and some ready-made pasta sauces are already low in protein. There are some very good handbooks which are put out by the Australasian Society for Inborn Errors of Metabolism. They provide extensive advice and recommendations regarding regular supermarket items that are suitable for a low-protein diet. Some of these items are things like rice milk, cornflour, some gluten-free foods and Asian food items as well.

The minister has said that foods for people managing protein and metabolic disorder are now more readily available and cheaper than when the program began, and that a number of medicines have been added to the Pharmaceutical Benefits Scheme. Having said that, I note that the motion is highly critical of the lack of warning and the lack of consultation that the minister undertook. My experience of the minister, since she has been the Minister for Health, is that she does consult widely and consultation is ongoing. That outlines the points behind the government's decision here, but the minister is always ready to listen to other points of view. I have found her very open in that way. As at March this year there were 985 people receiving the subsidy. The government's rationale behind its decision is that we have put a number of amino acids and supplements onto the PBS, the foods necessary are readily available at normal supermarkets as well, and there are very good dietary guidelines available.

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