Disease index

urea cycle disorders

Metabolic · 2015–2021

3decisions
3medicines
0carried consumer input
0individual submissions

No submission for this condition has carried consumer input, including the 3 made since the comments facility came into use.

Every decision

MedicineMeetingOutcomeConsumer input
essential amino acids formula with vitamins and minerals Urea cycle disorders (UCDs) and gyrate atrophy of the choroid and retina. Nov 2021 Recommended unclear
sodium phenylbutyrate Chronic treatment of patients with urea cycle disorders (UCD), particularly for management of hyperammonemia associated with UCDs. Jul 2019 Recommended with restriction none received
citrulline Treatment of urea cycle disorders, specifically for preventing low plasma arginine or citrulline levels. Nov 2015 Recommended with restriction none received

What the PBS pays

$17M in government benefit over 2024–25, across 16,460 services.

This is spend on the medicines considered for this condition, not spend on the disease. A medicine used for several conditions is counted in full under each, so figures across conditions add to more than national PBS expenditure.

MedicineGovernment benefit
essential amino acids formula with vitamins and minerals $16.6M
citrulline $0.4M
sodium phenylbutyrate $0.1M

Conditions are classified by a language model from the indication text of each submission, so an individual label here can be wrong. Consumer input is read from the document's own consumer comments section: 0 of 3 decisions since 2014 carried some. Silence means no comment reached the committee through that facility, not that nobody was affected. More on how this was built.