Federal Government cuts essential funding for children with genetic disorders

The Federal Government has quietly cut essential funding for children and adults suffering from a rare genetic Inborn Error of Metabolism (IEM) disorder.  For these individuals a vital expensive medically-prescribed diet, supplemented by the funding, is required to avoid brain damage, seizures, liver failure, coma and in some cases death.

Families and individuals who receive the grant have been notified from the Federal Government that the grant will end at the end of the year, without any warning or consultation.

President of the Metabolic Dietary Disorders Association (MDDA), Monique Cooper said that removing the grant would mean that families risk not being able to afford to feed their children safely.

“One in 15,000 Australians are born with PKU (the most common of the IEMs disorders) every year. While the numbers are small, the impact of these invisible disorders is great. Those born with the genetic disease can’t break down specific amino acids in protein. That means those suffering with these IEMs can eat very little food that has protein in it – which excludes most foods that Australians enjoy every day,” Mrs Cooper said.

“The grant currently supplements some of the very expensive food costs. One box of specialised low protein cereal costs $14.65. A loaf of specialised low protein bread costs $10.00. Specialised low protein grated cheese costs $28.00. 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 suffering with this disease.

“The Federal Government currently provides $256.75 per month to 904 people with the disease. This only covers a fraction of the overall food costs, but is extremely valuable to affected families and goes some way to assist. It would be devastating to families if they were to lose this essential funding,” Mrs Cooper said.

The Federal Government advised of its decision to pull funding without any consultation with the representative bodies for sufferers of the disease – the MDDA, PKUNSW or the Australasian Society of Inborn Errors of Metabolism – that represent the medial clinicians for IEM disorders.

“We are outraged that consultation has not occurred prior to such an essential service being removed. The Federal Government’s stated reason for removing the funding is not factually correct.

“The Government believes that the essential low protein foods are now more accessible and lower in cost. I can positively say that this is not the case and the Government has been misinformed.

“We are calling on the Federal Government to urgently reconsider their decision that will impact families who simply want to feed their children safely and IEM adults who now become a financial burden to their families.

“We have requested an urgent meeting with the Federal Government’s Department of Health for early this week and understand they are keen to participate. We are hopeful the Department will, once they understand the facts and implications, have the decision reversed so hundreds of families can have a better chance of a normal life,” Mrs Cooper said.

Families seeking advice and support can contact MDDA for further information on 1800 288 460.

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