Time for your submission
A big thank you to everyone who attended and participated in our webinar on 15 January. For those who registered but couldn’t join at the time, please check your emails for a link to the recording.
If you haven’t done so already, now is the time to make your submission to PBAC about new treatments for Myasthenia Gravis. Make your submission(s) via the online form here by Wednesday 29 January 2025.
Please review the information in the webinar and read back over the MAA guidance on each of the 4 treatments:
For more information on making a submission to PBAC generally, please take a look at the Patient Voice Initiative (PVI) website, especially their Patient Voice Hub .
We encourage you to use this opportunity to clearly state your preferences between the 4 new treatments, and/or your preferences between these new treatments and current treatments available to you in Australia. You should also mention why these are your preferences.
Some questions to think about (this list is just an example and is not exhaustive):
– Are your preferences mostly about the way a treatment is delivered? For example, would you prefer intravenously but less frequently than current treatments, or subcutaneously from home meaning you would not have to go to hospital to receive it.
– Are your preferences about changing or reducing your treatment burden? For example, do you prefer to not have intravenous treatment and take tablets instead, or do you prefer treatment with less or different side effects?
– Are some side effects or adverse events less desirable or less acceptable than others? Are there side effects that you find harder to tolerate?
– What is it about these 4 treatments, or one of them, that would provide you with a better outcome as a patient? What is different or unique about each treatment? Go further if you can and describe what a benefit about one treatment means to you.
– What health outcome are you looking for?
– What is important to YOU?
From last year’s submissions and stakeholder engagement, PBAC understands the unmet need and issues for Myasthenia patients in Australia. What we need to do now is show them the different benefits they do not see or the concerns they do not see. That is, talk about what happens as a patient in the real world.
A reminder that you can make a submission for one or all 4 treatments by completing the online form here. You have until Wednesday 29 January 2025.
Thank you for sharing your lived experience as a Myasthenia patient (or family member, friend or carer) and thank you for contributing to this once in a generation opportunity!
Kind regards,
Susan White (MAA Chairperson)
Natalie Windle (MAA Secretary & MGNSW President)
Carol Buchanan (MAA Board Member & MGAQ President)
**Please note the MAA and state associations do NOT provide medical advice regarding medications or treatments for individuals. Decisions about whether one of these treatments will be suitable for you as a patient must be discussed with your doctor or health professional. The focus of these submissions to PBAC is to describe our patient perspective of living with MG and where/how/why we feel we have unmet needs, uncertainty, and ongoing burden with current treatment options.
