Disease index

advanced systemic mastocytosis

Haematology · 2025–2025

1decision
1medicine
1carried consumer input
0individual submissions

Every decision

MedicineMeetingOutcomeConsumer input
midostaurin Treatment of adult patients with advanced systemic mastocytosis (AdvSM), including aggressive systemic mastocytosis (ASM), systemic mastocytosis with an… Mar 2025 Recommended with restriction input received Leukaemia Foundation

Who spoke

Leukaemia Foundation

What the PBS pays

$11M in government benefit over 2024–25, across 730 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
midostaurin $10.7M

Appraised elsewhere

NICE, in England and Wales, has appraised 2 technologies for this condition, recommending 2 . 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
avapritinibAvapritinib for treating advanced systemic mastocytosis TA1012 recommended restricted 2024-11
midostaurinMidostaurin for treating advanced systemic mastocytosis TA728 recommended restricted 2021-09

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.