Disease index

atypical haemolytic uraemic syndrome

Haematology · 2013–2023

5decisions
2medicines
2carried consumer input
14individual submissions

Every decision

MedicineMeetingOutcomeConsumer input
ravulizumab Atypical haemolytic uraemic syndrome (aHUS). Treatment of patients with active and progressing thrombotic microangiopathy caused by aHUS. Jul 2023 Deferred 14 individuals
eculizumab Prophylactic treatment to prevent atypical haemolytic uraemic syndrome (aHUS) recurrence and thrombotic microangiopathy (TMA) in patients with end-stage renal… Mar 2018 Not recommended input received
eculizumab Treatment of atypical Haemolytic Uraemic Syndrome (aHUS). The submission concerns continuation and re-commencement criteria for PBS-subsidised therapy after an… Aug 2014 Noted no section in document
eculizumab Treatment of atypical haemolytic uraemic syndrome (aHUS) with confirmed ADAMTS-13 activity >5% (or >10% per PBAC recommendation) and where Shiga-toxin… Mar 2014 Recommended with restriction no section in document
eculizumab Treatment of atypical haemolytic uraemic syndrome (aHUS), a rare condition causing thrombotic microangiopathy with end-organ ischaemia and infarction. Mar 2013 Not recommended unclear

What the PBS pays

$143M in government benefit over 2024–25, across 2,593 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
ravulizumab $105.7M
eculizumab $37.1M

Appraised elsewhere

NICE, in England and Wales, has appraised 1 technology for this condition, recommending 1 . A different committee, a different population and a different price: this is what has been looked at there, not a verdict on what happened here.

TechnologyAppraisalOutcomeDate
ravulizumabRavulizumab for treating atypical haemolytic uraemic syndrome TA710 recommended 2021-06

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: 2 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.