Disease index

maternal phenylketonuria

Metabolic · 2020–2020

1decision
1medicine
1carried consumer input
35individual submissions

Every decision

MedicineMeetingOutcomeConsumer input
sapropterin Treatment of hyperphenylalaninaemia (HPA) due to phenylketonuria (PKU) in pregnant women or those actively planning to become pregnant, in combination with a… Dec 2020 Deferred 35 individuals Rare Voices Australia · Metabolic Dietary Disorders Association

Who spoke

Rare Voices Australia · Metabolic Dietary Disorders Association

What the PBS pays

$17M in government benefit over 2024–25, across 2,436 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
sapropterin $17.3M

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: 1 of 1 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.