Sydney woman Micaela Hopkins has two sons with PKU who must limit their protein intake to 14 grams a day. She said she relied on the medically modified foods to give her sons enough food to satisfy their hunger without exceeding their allowance of protein.
I think most people don't realise that there is protein in just about everything that you eat, Ms Hopkins said.
The nice thing about the grant is that it enables all people regardless of what their financial status is to be able to access these foods.
​But the grant will be abolished in December as part of a broader rationalisation of health programs which will save almost $1 billion over five years.
Ms Hopkins said she believed the decision, which patient groups say they were not consulted about, reflected a lack of understanding in government about how difficult it was to adhere to a low protein diet, and the seriousness of the health consequences of not keeping to such a diet.
For some people who are struggling already, this is going to cause them to go off diet [and] there will be a much bigger burden on the healthcare system, she said.
Opposition Leader Bill Shorten said the cut was extraordinarily cruel and heartless and Labor would fight to have it reversed.
He said Labor was concerned that the abolition of the grant was just the tip of the iceberg and that other cuts would emerge as part of the $1 billion rationalisation.
Health Minister Sussan Ley said the cost of managing metabolic disorders had gone down since the grant was first offered.
Foods for people managing protein metabolic disorder are now more readily available and cheaper than when the programme began, Ms Ley said.
She said the Metabolic Dietary Disorders Association's dietary handbook said that supermarket items such as cornflour and rice milk could be used in place of products such as wheat flour and dairy milk by people with protein disorders.
She also said a number of new medicines had been added to the Pharmaceutical Benefits Scheme over the years to assist with the nutritional requirements of people with protein disorders.







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