Disease index

plexiform neurofibroma NF1

Rare disease · 2022–2024

2decisions
1medicine
2carried consumer input
51individual submissions

Every decision

MedicineMeetingOutcomeConsumer input
selumetinib Treatment of symptomatic, inoperable plexiform neurofibroma(s) in paediatric patients aged 2 years and over with neurofibromatosis type 1 (NF1). Mar 2024 Recommended with restriction 22 individuals Tumour Foundation
selumetinib Treatment of symptomatic, inoperable plexiform neurofibroma(s) in paediatric patients with neurofibromatosis type 1 (NF1). Nov 2022 Not recommended 29 individuals Tumour Foundation

Who spoke

Tumour Foundation

What the PBS pays

$4M in government benefit over 2024–25, across 302 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
selumetinib $4.4M

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 2 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.