Rob Mitchell (McEwen, Australian Labor Party) Share this | Link to this | Hansard source

'Federal government cuts essential funding for children with genetic disorders' was the headline of an MDDA press release on 25 May this year. The federal government sneakily cut essential funding for children and adults suffering from rare genetic disorders called inborn errors of metabolism. For these individuals, a vital but expensive medically prescribed diet—which was supplemented by the funding—is required to avoid brain damage, seizures, liver failure, coma and, in some cases, even death.

The federal government stated that the grant would end at the end of the year but they did not consult anyone about this. The grant currently supplements some of the very expensive food costs. One box of specialised low-protein cereal costs $14.65. Low-protein bread costs 10 bucks a loaf. Specialised low-protein grated cheese costs $28. These foods are only available from three mail-order national suppliers, and the delivery fees are also very high. It is easy to see how the monthly food bill can skyrocket for families dealing this illness.

As I said, the federal government currently provides $256.75 per month to 984 people with the disease. The federal government advised of its decision without consulting any major representatives or the peak body MDDA, which represents medical clinicians for IEM disorders. We know the government says that things are cheaper, you can buy them and they are more accessible, but that is just an absolute crock—absolute rubbish. I know that this is going to impact on Tiffany and Peter in caring for their son, Jesse, and also on Craig and Koby with their sons, Lachlan and Liam.