Media Release

Joint statement regarding the Federal Government’s announcement to add QALSODY (tofersen) to the Pharmaceutical Benefits Scheme

Published: 11 September 2026

FightMND and MND Australia welcome the Australian Government's decision to list QALSODY (tofersen) on the Pharmaceutical Benefits Scheme (PBS) and the meaningful difference it will make for eligible Australians living with SOD-1-ALS and their families.

This listing also reinforces the importance of genetic testing for people diagnosed with MND. We encourage anyone living with MND to speak with their neurologist about whether genetic testing is right for them and what the results could mean for their treatment and care.

While there is still much work to be done, this announcement marks important progress for the MND community. Not everyone living with MND will benefit from this treatment, and many people and families continue to hope for new therapies, improved care options and, ultimately, a cure.

We thank the Federal Government for its support in making this treatment more accessible and affordable for eligible Australians living with MND and their families, and for its continued support of the MND community. Together, these steps help bring hope to people and families navigating the challenges of this devastating disease.

Matt Tilley, CEO, FightMND

At FightMND we deal in the business of hope - which isn’t commercially available. But when critical treatment for people fighting this particular type of MND can go from costing $28,000 to around $25, that gets us pretty close to the perfect business model. We think this is a brilliant decision by the Federal Government.

Claire Sullivan, CEO, MND Australia

This is an important moment for the MND community. For eligible Australians with SOD1-ALS a treatment that slows down progression will now be genuinely financially accessible, giving people and their families something incredibly valuable in a disease where time matters.

There is still an enormous amount of work ahead of us. At MND Australia our focus is on helping every Australian with MND live better for longer today, while continuing to build the knowledge, care and research that will lead to more effective treatments and, ultimately, a cure.

FightMND media contact:
Samara Williams
P: 0434 118 826
E: [email protected]

MND Australia media contact:
Taylor Kingham
P: 0420 872 711
E: [email protected]