MND NSW and MND Australia have joined FightMND in welcoming 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 SOD1-ALS and their families.
Liam O'Meara, CEO of MND NSW, said 'this is a major step forward for the MND Community'.
"With QALSODY (tofersen) now listed on the PBS, Australians living with SOD1-ALS finally have subsidised access to a targeted therapy that can slow disease progression."
MND Australia CEO Claire Sullivan said '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."
This listing also reinforces the importance of genetic testing for people diagnosed with MND - people living with MND are encouraged 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 would like to join MND Australia in thanking 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.
