cryopyrin-associated periodic syndromes
Rare disease · 2014–2017
Every decision
| Medicine | Meeting | Outcome | Consumer input |
|---|---|---|---|
| anakinra Amendment of PBS listing from Authority Required (STREAMLINED) to Authority Required for treatment of patients with moderate to severe cryopyrin associated… | Jul 2017 | Not recommended | none received |
| canakinumab Treatment of adults and children with moderate to severe cryopyrin-associated periodic syndromes (CAPS), which consists of familial cold autoinflammatory… | Nov 2017 | Recommended with restriction | none received |
| anakinra Treatment of cryopyrin-associated periodic syndromes (CAPS). | Jul 2015 | Recommended with restriction | no section in document |
| anakinra Treatment of cryopyrin-associated periodic syndromes (CAPS) including NOMID/CINCA, Muckle-Wells syndrome (MWS), and familial cold autoinflammatory syndrome… | Nov 2014 | Recommended with restriction | 9 individuals Autoinflammatory Alliance |
Who spoke
Autoinflammatory Alliance
What the PBS pays
$3M in government benefit over 2024–25, across 2,326 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.
| Medicine | Government benefit |
|---|---|
| anakinra | $3.1M |
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 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.