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

In this constituency statement I want to highlight again the issue of inborn errors of metabolism, which I have been highlighting through the parliament this week. No decision highlights more highly the cruel and, frankly, pathetic nature of the government than the budget decision to cut what is a tiny subsidy of around $250 per month to help cover the costs of specialist foods for the families of 900 Australians suffering from rare conditions known as inborn errors of metabolism, or IEN. Managing these conditions requires a lifetime commitment to a rigid diet of carefully weighed synthetic, low-protein formulas and foods that are often very expensive to buy. They are not foods that are available in general supermarkets. They are not gluten-free foods. They are specific low-protein to no-protein foods. Pasta and rice at $10 a packet and cheese after shipping costs is included at $68 a block.

Without warning or consultation to any of these families or the organisations that represent them, they were informed last week that the grant would cease next month. I now want to read to the House a letter I received from a constituent of mine called Heidi about the impact that decision has had on her. 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.

Since 2001 I and many others with IEMs have received an IEM a monthly payment of $256.75 to assist with the cost of special food which has now been cut in the latest budget The reason provided by the Department of Health for ceasing the grant is that more supplements are now available and that low protein foods are now more accessible and lower in cost. Both of these reasons are false.

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 need to stick to my log protein a day. If I cannot stick to my diet my long term neurological health is at risk which could affect my capacity to work and live as a normal person.

I know from letters and emails forwarded to me and my colleagues that Heidi is far from alone in her distress, and I strongly suspect that there is not a member present who has not received similar correspondence since the budget. I wonder how the Treasurer can reconcile this pathetic small-minded measure, which only punishes those reliant on the subsidy to help cover the cost of protecting people with this very rare disease, with the miniscule savings. This is $3 million; this is not a big program.

Once again, I want to call on the Abbott government to seriously reconsider the cutting of this program, stop blaming people for their own decisions and actually reverse what is a very pathetic and small-minded decision in this budget. (Time expired)