Dravet syndrome
Neurology · 2020–2026
Every decision
| Medicine | Meeting | Outcome | Consumer input |
|---|---|---|---|
| cannabidiol Severe myoclonic epilepsy in infancy (Dravet syndrome); adjunctive therapy to antiseizure medications. | Mar 2026 | Recommended with restriction | unclear |
| fenfluramine Treatment of seizures associated with Dravet Syndrome in patients not adequately controlled despite treatment with at least 2 other antiepileptic drugs. | Nov 2024 | Recommended with restriction | input received Epilepsy Action Australia · Epilepsy Society of Australia · Epilepsy Society |
| cannabidiol Adjunctive therapy to treat seizures associated with Lennox-Gastaut syndrome or Dravet syndrome in patients 2 years of age and older. | Jul 2020 | Deferred | input received Epilepsy Society of Australia · Epilepsy Society · Epilepsy Foundation |
| stiripentol Adjunctive treatment of generalised tonic-clonic and clonic seizures associated with severe myoclonic epilepsy in infancy (SMEI, also known as Dravet syndrome)… | Mar 2020 | Recommended with restriction | none received |
Who spoke
Epilepsy Society of Australia · Epilepsy Society · Epilepsy Foundation · Epilepsy Action Australia
What the PBS pays
$19M in government benefit over 2024–25, across 7,545 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 |
|---|---|
| cannabidiol | $16.6M |
| stiripentol | $1.2M |
| fenfluramine | $0.6M |
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.
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.