amyotrophic lateral sclerosis
Neurology · 2018–2026
Every decision
| Medicine | Meeting | Outcome | Consumer input |
|---|---|---|---|
| riluzole Treatment of amyotrophic lateral sclerosis (ALS), specifically for patients with swallowing difficulties and/or requiring percutaneous endoscopic gastrostomy… | Mar 2026 | Noted | none received |
| tofersen Treatment of amyotrophic lateral sclerosis (ALS) associated with a mutation in the superoxide dismutase 1 (SOD1) gene. | Mar 2026 | Recommended with restriction | 33 individuals |
| edaravone Treatment of amyotrophic lateral sclerosis (ALS) in adults who are independent in activities of daily living, have normal respiratory function, and where… | Dec 2025 | Noted | no section in document |
| tofersen Adjunct treatment to best supportive care with or without riluzole in patients with amyotrophic lateral sclerosis (ALS) who have a superoxide dismutase 1… | Nov 2025 | Not recommended | 33 individuals Motor Neuron Disease Australia |
| edaravone Adjunct treatment to current standard of care with or without riluzole in patients with amyotrophic lateral sclerosis (ALS) who are independent in activities… | Mar 2024 | Recommended with restriction | 54 individuals Motor Neurone Disease Australia |
| edaravone Adjunct treatment to standard of care with or without riluzole in patients with amyotrophic lateral sclerosis (ALS). | Nov 2023 | Not recommended | 15 individuals Motor Neurone Disease Australia |
| riluzole Treatment of amyotrophic lateral sclerosis (ALS) in patients diagnosed by a neurologist with disease duration ≤5 years, FVC ≥60% predicted, and meeting… | Nov 2018 | Noted | input received Motor Neurone Disease Australia · MND Australia |
Who spoke
Motor Neurone Disease Australia · MND Australia · Motor Neuron Disease Australia
What the PBS pays
$2M in government benefit over 2024–25, across 12,778 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 |
|---|---|
| riluzole | $1.8M |
| edaravone | $0M |
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: 5 of 7 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.