Thank you to everyone who joined us for the webinar about new treatments and Pharmaceutical Benefits Advisory Committee (PBAC) submissions, and to all of you who made a submission and shared your lived experience and treatment preferences as part of the PBAC process. The PBAC meeting takes place in March, and we will know the outcomes of this meeting about 6 weeks later.
We’d like to share with you a bit about what the MAA submissions looked like. The key message of all submissions was how the new treatments offer a real opportunity to come closer to our goals of reducing the burden of living with Myasthenia Gravis (MG). This includes not having well-controlled symptoms or living with the fluctuations of MG. Other goals include improving the quality of life for Myasthenia patients and increasing the opportunities for Myasthenia patients to participate in work, to enjoy more family and community activities, to travel more freely, and to spend less time at medical appointments and more time out of hospital. Our vision is for each Myasthenia patient to have equitable and timely access to the best available treatment that most benefits them.
Our patient experience is diverse and varies among us and this is why the MAA supports a broad range of treatment options being available and accessible. The MAA also considered where there are gaps and unmet needs with current treatments and how the new treatments offer new targeted treatment pathways and flexible or convenient delivery options, compared to current treatments.
The growing evidence base from our research and surveys over the last few years was crucial for the MAA submissions. We thank you for contributing to this research, because this informed the MAA submissions on behalf of patients. Your input to each of these surveys made a tangible difference.
Some interesting statistics that represent our experience in Australia include the following:
- The MAA surveyed 194 MG patients in January 2024: 47% of those surveyed did NOT feel that their MG condition/symptoms are currently well-controlled and 75% felt that their MG, including side effects from treatments, is a burden.
- Research conducted by Janet Sansoni and colleagues in 2023 surveyed 280 MG patients and found that 58.3% of MG participants reported moderate to severe limitations in daily tasks and activities and 28.4% reported some limitations. Compared to the survey conducted in 2011, this survey also showed that workforce participation has not increased over time in Australia.
- More recently in January 2025, 64% of our webinar participants who answered a live poll question said they feel their MG should be better managed in terms of reducing the burden of living with the condition and/or improving their quality of life.
- 96% of the webinar participants feel that it is important to be offered new treatments (79% felt it is extremely important and a further 37% thought it is somewhat important).
- Finally, at our 2023 national patient MAA conference, we asked the patient audience in a live digital poll to share one key word that comes to mind when they think of MG. The most common words were challenging and frustrating.
For more details on our past and current research projects, please visit https://myastheniaalliance.org.au/research/.
Make sure you’re registered for MAA news and updates at https://myastheniaalliance.org.au/subscribe/. You can also contact us directly by calling 1800 802 568 or reach out to one of our state associations: MGNSW or MGAQ.
It is a busy time for Myasthenia and we thank you again for your contribution to all research and advocacy activities.