Disease index

PNH

Haematology · 2010–2024

2decisions
2medicines
1carried consumer input
0individual submissions

Every decision

MedicineMeetingOutcomeConsumer input
iptacopan Treatment of adults with paroxysmal nocturnal haemoglobinuria (PNH) who have inadequate clinical response to Complement 5 (C5) inhibitor treatment. Jul 2024 Recommended with restriction input received
eculizumab Treatment of paroxysmal nocturnal haemoglobinuria (PNH) to reduce haemolysis. Jul 2010 Recommended no section in document

What the PBS pays

$37M in government benefit over 2024–25, across 902 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
eculizumab $37.1M

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: 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.