Disease index

hereditary transthyretin amyloidosis

Rare disease · 2023–2024

2decisions
2medicines
2carried consumer input
69individual submissions

Every decision

MedicineMeetingOutcomeConsumer input
vutrisiran Treatment of hereditary transthyretin mediated (hATTR) amyloidosis in adult patients with stage 1 or stage 2 polyneuropathy, defined by Familial Amyloid… Nov 2024 Recommended with restriction 12 individuals Leukaemia Foundation
patisiran Hereditary transthyretin-mediated amyloidosis (hATTR) with stage 1 or stage 2 polyneuropathy in adult patients. Dec 2023 Not recommended 57 individuals Australian Amyloidosis Network

Who spoke

Australian Amyloidosis Network · Leukaemia Foundation

What the PBS pays

$2M in government benefit over 2024–25, across 15 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
vutrisiran $1.7M

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
eplontersenEplontersen for treating hereditary transthyretin-related amyloidosis TA1020 recommended restricted 2024-11

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.