The past fourteen months has convincingly demonstrated why it is so important for this small patient group of approximately 2,500 people to have a strong National voice and a united stance. This is the leadership provided by the Myasthenia Alliance Australia.
Addressing medicine shortages, facilitating research opportunities, bringing awareness and community connection as well as making meaningful connections with government, health professionals and Industry have kept the MAA busy through the 2022 year.
By registering at www.myastheniaalliance.org.au and following the activities of the Australian State Associations in NSW and Qld people have been kept abreast of the work which has been undertaken throughout this past year. Given below are the highlights from an extraordinary year’s work by a very small volunteer team.
- Rituximab for Myasthenia patients. Rituximab is confirmed available equally to all Myasthenia patients should their Specialist wish to consider this medication choice. Listing via the PBS was finally achieved on September 1, 2022. We thank the relevant Government Departments for bringing about the legislative changes required for this unique situation.
- Art With Heart Awareness Campaign. A first-time project was introduced to bring Australia-wide conversation about the rare condition of Myasthenia Gravis. The platform of on-line art/craft/other auctioning allowed patients to come together in a fun and collaborative space. It allowed the general public to learn about the condition and to offer tangible support and it established a platform for building awareness. This year’s “Art With Heart” campaign was an inaugural offering and now it needs momentum to be a signature event for the myasthenia community.
- Mestinon supply shortages. Many, many hours of work have been devoted to communicating with the pharmaceutical companies, Government Departments and our community as this difficult and as yet incomplete issue progresses. Thankfully, due to the on-going work of the MAA, all Government Departments including the Minister’s Office are familiar with our condition and have been supportive.
- Access to TPE. Following a recommendation from the Health Minister’s Office a submission to the MBS Review Taskforce occurred September 2022. This follows four years of effort to fully understand the issues and interactions surrounding the declining access to Therapeutic Plasma Exchange as a treatment option for people with Myasthenia Gravis. The ‘Patient Voice’ option proved to be the only suitable platform for raising an issue that is so multifaceted. Feedback is expected in 2023.
- Partnering with Rare Voices Australia (RVA). Every year the MAA reports on the collaborative work undertaken with this group. The RVA has gone from strength to strength and now celebrates 10 years. Once again, we have worked collectively on many topics. Susan was delighted to attend an amazing summit for the rare disease sector, hosted by RVA in November 2022. As an invited presenter, the MAA were able to provide a case study demonstrating the importance of partnering across the rare disease sector. This opportunity allowed the MAA to cement contacts with many Heads of Government Departments, with Industry and with our peers in the patient advocacy world.
- Research – The Patient Reported Outcomes Research Project in collaboration with TerumoBCT, ANU, MAA and the University of Sydney was completed. This project is hugely significant in both size and information collected. The data collection phase was closed off late January 2022 and data analysis progressed slowly but steadily throughout the year. Indicative results have already proved invaluable to the MAA. Some results have been generally shared. A Journal Article and a Conference Paper are expected in 2023. This work is highly credible thanks to the number of participants. A huge thank you is extended to the Australian Myasthenia community for responding so positively to this project and to other requests which occurred during the year. Fostering research remains a focus and opportunities have presented across a broad range of topics in 2022.
Foundational and follow up work continues for the MAA and the diversity of topics is noticeable. This includes on-going support for MGBase, seeking to enhance the website, communicating more deeply and keeping up with a rapidly engaging Patient Voice sector.
The work undertaken in 2022 and indeed during the previous eight years since inception of the MAA, has brought additional recognition and understanding of the experience of living with Myasthenia each and every day. This growth in knowledge is being experienced within our own community as well as with Government, Industry, Researchers and Health professionals.
The MAA is a fully volunteer run and donation funded organisation. The financial status of the Alliance has declined in 2022 due to some major expenses. Currently it remains viable, operating on low overheads. All donations are very gratefully received and can be made as designated contributions via the State Associations.
In summary, the MAA Board are keenly focused on the “What Next” and “How To” conversations for 2023. Regrettably the current operational model involves a reducing worker base and an expanding platform of work. This puts the future viability of the MAA at risk. We must find solutions for the future sustainability of this organisation. Therefore, we aim to seek out fresh ideas from everyone with an interest in supporting people affected by this condition. Funded and unfunded models need to be considered.
Please reflect on the fact that over half the MAA Board has each individually donated almost ten years of time and energy to supporting everyone around Australia. It is time for others to come forward. It is time for other State Associations to be founded. Sadly, during the medication crisis, many of the more distressed callers were Victorians – they simply did not know that the medications were becoming short and did not know who to reach out to.
As Chairperson, I deeply thank my team of four for their tireless, gracious and generous commitment to this significant work. The depth of support runs deeper with the Committees of the NSW and Qld Associations giving generously also. This year has seen an increasing number of people registered with the Alliance. Without this support our work could not be effective. Our sincere appreciation is extended to everyone involved.
2023 will be my final year as Chairperson. Ideally, the year will be spent mentoring others as they become involved. Progressing the organisation to a more enduring operational model is also a priority.
With very best wishes for people to stay strong and to find joy in 2023.
Susan White MAA Chairperson.