Over the past month I have been speaking with patients, parents, representatives and my parliamentary colleagues about the Inborn Error of Metabolism programme.

Through these conversations, particularly those patients with Inborn Error of Metabolism and their families, I have become aware of the difficulties associated in managing these conditions. These conversations have highlighted the importance of strict low protein products and the costs associated and the work involved in food preparation.

The initial evidence relied upon by my department, including that of the Metabolic Dietary Disorders Association’s own dietary handbook, pointed to patients having cheaper supermarket options and having access to a range of new medicines being available on Pharmaceutical Benefits Scheme since the programme’s introduction in 2001.

The decision to finish the programme on 31 December 2015 was based on this evidence from my department available at the time. We now have additional evidence.

For more details, go to: http://www.health.gov.au/internet/ministers/publishing.nsf/Content/health-mediarel-yr2015-ley094.htm