Generalised Myasthenia Gravis (gMG) patients can now have access to a new targeted therapy Ultomiris, via the Pharmaceutical Benefits Scheme (PBS), broadening our treatment options.*
The MAA shared the important moment when Minister Butler announced that this new treatment has been listed, at the annual Rare Disease Day parliamentary event.
Access to new targeted therapies can help increase the opportunities for Myasthenia patients to participate in work, to enjoy more family and community activities, to travel more freely, and to spend more time out of hospital.
The outcome from the Pharmaceutical Benefits Advisory Committee (PBAC) meeting in March 2025 noted that together patients, carers, and clinicians established the unmet needs of our patient community. PBAC “found the comments very informative for understanding the high and unmet clinical need for new effective treatments and the potential use of the new therapies in practice.”
After more than 2 years of advocacy, the MAA is pleased that a new treatment is offered more widely to patients to address our unmet needs. Using evidence from research and patient surveys, we told the patient story, especially for refractory patients who are not responding to current treatment(s) sufficiently and still experience MG symptoms every day.
The MAA also advocated for early and upfront treatment to minimise the poorer outcomes that result from last resort practices, and we highlighted the diversity of our patient experience and our different preferences.
Susan White, Chairperson of MAA said: “It is such an important day for myasthenia gravis patients as they will now have PBS access to a new treatment for this condition. It’s been a long journey to see a new medicine reach the PBS and we thank the government for making an innovative medicine accessible for Australians.”
The advocacy does not stop now. The MAA will continue to work with pharmaceutical companies and clinicians to ensure we monitor and capture adequate and useful data on the use of this therapy.
We will also work to ensure people living in regional/remote areas are not left behind and that other sub-groups of MG patients, including non-AChR+, ocular MG patients and children, can access the best possible treatment for their individual condition.
The MAA aims for MG patients in Australia to have equitable and timely access to the best available treatment that most benefits them.
The MAA thanks the sponsoring company for their work through the PBAC process to offer this therapy for gMG patients via the PBS and for working with us to better understand the new treatments.
Please talk to your healthcare professional to discuss your treatment options and plan, including any possible side effects or risks.
If you have any questions or feedback to share with the MAA, please contact us by emailing info@myasthenia.org.au or info@mgaq.org.au or calling 1800 802 568.
*The MAA and state associations do NOT provide medical advice regarding medications or treatments for individuals. Decisions about whether new treatments will be suitable for you as a patient must be discussed with your doctor or health professional.