urea cycle disorder
Metabolic · 2017–2019
Every decision
| Medicine | Meeting | Outcome | Consumer input |
|---|---|---|---|
| sodium phenylbutyrate Chronic treatment of patients with urea cycle disorders (UCD) as second-line therapy in patients who have failed or are intolerant to first-line therapy with… | Mar 2019 | Not recommended | input received Metabolic Dietary Disorders Association |
| sodium phenylbutyrate Treatment of patients with urea cycle disorders (UCDs) who have elevated ammonia levels not controlled with diet alone and other adjunct care. | Mar 2018 | Noted | input received |
| arginine Dietary management of urea cycle disorders (UCD). | Nov 2017 | Not recommended | none received |
| sodium phenylbutyrate Treatment of patients with urea cycle disorders (UCD) and elevated plasma ammonia levels. Used in chronic management as part of a comprehensive treatment… | Nov 2017 | Not recommended | input received Metabolic Dietary Disorders Association |
Who spoke
Metabolic Dietary Disorders Association
What the PBS pays
$1M in government benefit over 2024–25, across 1,014 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.
| Medicine | Government benefit |
|---|---|
| arginine | $0.6M |
| 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: 3 of 4 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.