News
Tofersen PBS listing open for consultation
Published: 28 August 2025
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A medicine to treat SOD1 related MND/ALS, tofersen, has been submitted for consideration at the November 2025 Pharmaceutical Benefits Advisory Committee (PBAC) meeting.
At the November meeting, the PBAC will decide if tofersen will be added to Australia’s Pharmaceutical Benefits Scheme (PBS). PBS listing means the Australian Government would subsidise the medicine, making it a more affordable.
As part of the review process, the PBAC opens a consultation period, where input is welcomed from patients, carers, health professionals, consumer groups or organisations and members of the public on medicines submitted for PBAC consideration.
About Tofersen
Tofersen (said “toe-fur-son") is a medication that reduces the production of a faulty protein produced by mutations in the SOD1 gene. Tofersen can slow the progression of MND in people with a SOD1 mutation. It is the first gene-related therapy to be approved for treatment of MND.
Tofersen (marketed under the brand name QALSODY) is only available to people living with MND who carry changes in the SOD1 gene. Biogen, the pharmaceutical company that developed the drug, currently has tofersen available in Australia through their compassionate access program.
How can I contribute to the consultation?
The PBAC public consultation period is now open (closing on 24 September 2025). If you, or your family, will be impacted by the listing of tofersen on the PBS, and would like to contribute, you may choose to respond in one or both of these ways:
Option 1: Complete a personal submission through the PBAC portal (by 24 September 2025). Please email us at research@mndaustralia.org.au if you would like some tips on how to complete the submission or more information about tofersen.
and/or
Option 2: Contribute to MND Australia's organisation submission, by telling us how the listing of tofersen on the PBS will impact you, or your family. Please email us at research@mndaustralia.org.au by 8 September 2025 with your contribution.