Dear Myasthenia Gravis Community,
Looking back I realise just how much time has slipped away since I last wrote to you. Thank you for your patience and understanding, and hopefully your excitement as the constant stream of newsfeeds has flowed during this period. The MAA has not been idle and it is hard to know where to start in summarising the previous two years!
Reflecting back to the hugely successful October 2023 Conference which was hosted in Sydney, this event must be seen as the start of great new developments for our patient group. During the Conference, Dr Vucic presented the published data discussing our “Patient Reported Outcomes” information. This was Australian research telling the Australian story! We also offered some SLIDO polling to capture your experience with MG. The words of “challenging” and ‘difficult” resonated with many of you. Your voice has been captured and your feelings have been shared with great impact.
Susan White and Natalie Windle presenting at the UCB Australia dinner
In just two years, the MAA prepared eight submissions to the Pharmaceutical Benefits Advisory Committee (PBAC). With each submission to government, the patient stories described the unmet needs and the great desire to have new and innovative treatments made available. The burden of treatment and the inequitable access were also key foci. These lengthy and developing communications were impactful. Patient responses captured during this period were shared and your individual submissions supported our statements. I thank board member Natalie Windle, for the hours of careful consideration and effort that resulted in these detailed submissions being written.
The outcome from these submissions was very positive with four new treatments being recommended for inclusion on the PBS. However, this is only the first step in a lengthy process of government and company reviews. After fifteen months we are delighted that two of the four products have now been made available on the PBS. Both products are complement inhibitors with Ultomiris (Ravulizumab) becoming available from March 1st 2026 and Zilbrysq (Zilucoplan) from April 1st. 2026. The MAA were present when Minister Butler made a special announcement and personally referenced the Myasthenia community’s long wait for new treatments. With this news shared, the MAA is now focused on making available more information about these treatments and about the requirements surrounding access and eligibility for patients. The information shared will be loaded to the website for repeat referencing. Please take advantage of all the Australian information being captured and shared. This will assist you in having meaningful discussions with your Specialist. Of note – the Australian government has been very broad in offering these products. This is world leading compared to many countries and we are very thankful that our guidance was heard. Access to these products will be reviewed in two years and the MAA will be capturing your experiences to provide feedback for these reviews.
The Myasthenia Alliance Australia Medical Advisory Board – Natalie Windle, Dr Stefan Blum, Dr Katherine Buzzard, Dr Stephen Reddel, Susan White
The remaining treatments, two FcRn Inhibitors, are still progressing through the systems. No news is expected any time soon. These treatments are Vyvgart and Rystiggo.
A huge amount of educational materials have been provided since the last conference. These materials have covered topics including information about the expanding treatment options, understanding the vital role of nurses in MG, an introduction to the assessment tools which will be increasingly used in MG care in Australia and tips to integrating physiotherapy into a care schedule. All this content is available on the MAA website. Use the search button, look in the dedicated sections or track back through the news alerts to find the content you are interested in viewing. www.myastheniaalliance.org.au.
Keep following the news alerts as so much more information is still to flow in 2026.
Dr Mike Freelander MP & Susan White at the Rare Voices Day Parliament Event
Research is another focus of the MAA. We are partnering in self initiated projects, in shared research and in supporting research conducted by others. Surveying MG patients remains an important way of gathering information and data. Every time our community responds to a survey, a positive step forward is taken. The Australian MG community has a reputation for engaging and assisting. This is something to be very proud of. The MAA thanks everyone for rallying each time a request goes out. This positive response ensures that each subsequent research project is positively considered. All this tells our story and fosters more curiosity into understanding myasthenia gravis in greater detail. More surveys can be expected and your on-going support is appreciated.
The MAA remain very supportive of MGBase. This data source for MG patients is now world leading and membership is growing every day.
Some fun facts include –
- As at April 21st, 1866 patient data is captured by 194 members in 16 countries.
- Most exciting is that 7 sub-studies are listed. The research topics are invaluable. Visit mgbase.org to follow.
- The majority of registered patients are Australian.
- Significant fundraising by the Australian myasthenia community ensured that this data base was able to be initiated.
News about Clinical Trials which are available in Australia is shared via the MAA news alert system. It is exciting to know that myasthenia gravis is attracting much attention and investment around the world and that we can be a part of this. Please keep following by registering with the MAA website. www.myastheniaalliance.org.au
Susan White and Natalie Windle promoting Myasthenia Alliance Australia to event attendees
Along side education and research, raising awareness and advocating for MG patients are also high priority areas for the MAA. Your board members are meeting government and industry representatives regularly. They are actively engaged with other patient groups even meeting up late at night in order to speak with European and USA counterparts. Our endeavours are recognised abroad as well as at home. Each engagement deepens our understanding of the patient advocacy sector and offers ideas for improving services to our own community.
Our third Art With Heart awareness campaign is currently running and will conclude during June International Myasthenia Gravis Awareness Month! We are extremely grateful to renown artists, local businesses and patients for contributing to this auction. The objective of this project is to facilitate conversation throughout Australia about myasthenia gravis. It is a chance for individuals to talk about this condition without focusing on personal experiences. Every time someone new hears the name it is a step towards more understanding. Again, the success of this campaign lies with everyone doing a little something! Please contribute with donations and then please bid on the auctioned items to show appreciation. The option to make a donation is also available removing any pressure on your contacts to make a bid. Importantly, please tell others and ask them to do the same.
The items for auction are now available for your viewing. Please visit https://myastheniaalliance.org.au/art-with-heart-auction/
Finally, I wish to share that the MAA celebrated 10 years in October 2024. That means that we are now headed to 12 years of amazing work advocating for all Australians. Everyone involved with the work of the State Associations or the MAA is also a patient and works in a volunteer capacity! I thank the MAA board members for all that they give and honour all that is achieved. We would very much welcome additional volunteers. If you want to make life with MG just a little bit more meaningful for you and other patients, please consider getting in touch with your State Association. Family members and carers are welcome.
Blessings and good wishes to all.
Susan White – MAA Chairperson