Stephen Jones (Throsby, Australian Labor Party, Shadow Parliamentary Secretary for Regional Development and Infrastructure) Share this | Hansard source

On 2 June, immediately after the budget, I received a letter from a constituent of mine, Ms Crystal Egens. She writes:

Both myself and my brother suffer from a genetic condition known as PKU. It is a condition that we have had all our lives and it's not curable. Since 2001, we have been receiving a payment of a grant of $256 per month under the Inborn Error of Metabolism Programme, which helps people with genetic disorders including, but not limited to, PKU. This grant from the government is to help us to get toward purchasing the low protein foods that our diet relies on to keep our protein levels low. These low protein foods are only available through a limited number of suppliers, some of which are located overseas, at a price which can be up to and even more than five times the normal price for equivalent foods found in your supermarket. I have enclosed a copy of the price list—

and I have a copy of that price list, which I am able to table for the benefit of the parliament today.

Companies which set out the approximate cost of each item note that most of these items are usually purchased in bulk.

The recent budget has announced that they plan to cease paying the grant connection January 1 2016, and our last payment will be received in December this year. The reasoning for this is the misguided view that for people with conditions like ours, there are now more products available, the costs have gone down and they have subsidised a range of new medications.

She goes on to say that these claims are not true. She points out the difficulties with managing the condition and the severe complications and side effects of not managing the diet properly, including 'mental retardation, especially with younger children whose brains are still developing, seizures, tremors or jerky hand and leg movements, hyperactivity, stunted growth, eczema and renal failure', and she says, 'So, as you can see, maintaining our diet is crucial for our wellbeing and development.'

She points out that there are only 904 recipients of this grant Australia-wide and points out:

The savings made, which I estimate to be at around $3 million per annum are far outweighed by the cost to the health system of people not having access to these foods and lapsing into any of the side effects or conditions if they are unable to manage their health conditions properly.

Minister, in light of this representation I have had and hundreds of other representations that have been received by members of this House from around the country, and in light of the fact that the grant is worth about $3,000 a year, the savings to the budget is going to be around $3 million a year.

I implore the government through you, Minister, to do the right thing by my constituents and to reconsider this cut and to consider the benefits to the government of this $3 million expenditure out of a budget that we have heard is well in excess of $9 billion. It is a very small expenditure overall, and the benefits to these individuals are enormous. The costs to the health system will be extraordinary if we get this wrong, so I implore the government through you, Minister, to reconsider this issue. I ask you now: is the government willing to reconsider and reverse the decision to cut funding to the Inborn Error of Metabolism Program?

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