Yet another amazing year for the Alliance! The MAA Board are extremely proud to report that, through the past twelve months, they have been very active and have remained highly focused on the diverse agenda of this organization.
Regrettably, after 6 months of this term, Dianne Herbert was unable to continue in her position and we express our thanks to her for her support to the Alliance and wish her well for the future. The Board is currently operating on a complement of 5 members. Sincere appreciation is expressed to Carol Buchanan, Glenda Bidner, Ian Hollingworth and Robert Dadge for their invaluable input through this fifth year of operation. Sincere thanks must also be extended to the MGNSW and MGAQ Committees for making the conference achievable.
The objectives of this organization include providing support and advocacy via a united position for all Australians. Work this year has encompassed bringing people together for support and education, fostering research and creating awareness with a focus on Federal Health policies.
A third National Conference was hosted in Brisbane on August 3rd. With 147 registrations and a very full and varied programme it stretched the Alliance resources to capacity. Much gratitude must be expressed to Dr. Stefan Blum for facilitating this collaborative opportunity. The work was paced over an 8 month period and he thoughtfully responded at every step of the process and to every request including an ABC media opportunity. All the feedback indicates that both speakers and guests thought the day a huge success. Connections were made and potential projects identified. These have been followed up.
CSL were strong supporters of the Conference and took a keen interest in the work of the MAA and the State Associations. On-going discussion has brought forward several opportunities and we look forward to bringing these to our community.
The MAA remains very committed to partnering with Rare Voices. Susan attended the Rare Diseases Day Function hosted by Nicole Millis (CEO Rare Voices) in Canberra in February and met with Minister Hunt, his key Assistant Sam Develin, and Parliamentary Friends of Medicine MPs John Alexander and Dr. Mike Freelander. We were thrilled to have Nicole agree to be a key speaker at the Conference. She guided us to successfully bringing about the changes we seek. Working collaboratively continues to be a priority.
Pursuit of gaining PBS access to Rituximab for the treatment of myasthenia continued throughout the year. With support from Dr. Blum, Dr. Reddel and Prof. McCombe a submission was sent to Minister Hunt. A prompt response was received encouraging the MAA to work through a process. This we continue to do with on-going higher-level conversations with the TGA, the PBAC and with Roche who produce the drug. Individual members approached local Federal Politicians who in turn approached the Minister with regard to this question. Supporting information continues to be gathered and the quest continues.
A constant question for the State Associations has existed around giving advice regarding the safe use of medicines when people suffer with myasthenia. Sufferers had become fearful and the ignorance of practitioners remained. A lengthy attack of this problem resulted in Dr. Blum (MAA Medical Advisory Board Member) working with us to produce a new guideline for all Australian sufferers. We thank him for supporting this initiative and happily report that it is available on the MAA website for everyone and also through the State Associations.
RPP Group, sponsored by Terumo (makers of Plasma Exchange Equipment), approached the MAA to participate in a conversation to the Australian Government regarding the Use of Therapeutic Plasma Exchange in Neurological Conditions in Australia. The MAA considered that enhanced offering of all suitable forms of treatments for Myasthenia is a priority. Susan and Carol have worked with RPP Group to ensure a comprehensive conversation around this treatment form. A Position Paper was written and this has been presented to MP Dr. Mike Freelander. This is an on-going project for RPP Group and the MAA are kept informed of developments.
Research continues to be a top priority for the MAA. When people with an interest in our condition register with the MAA website and the State Associations it empowers the Board to offer wide reaching and effective communication with the Australian Myasthenia community. This is a significant strength for any rare disease and is very encouraging to researchers.
- The eNID project progressed slowly during the year but with strong support from the MAA it has not stalled and the next stage is expected to be reached early in 2020.
- The MAA has been a keen advocate of a Physiotherapy Research project undertaken through the University of Queensland and supported by the MGAQ. Special presentations and access to sufferers was organized as a part of the conference. The first stage has been completed with more research following.
- The RBWH and UQ Patient Survey remains an important project and is supported by the MAA.
- Several additional approaches have been made to the MAA by assorted researchers. If suitable they are referred to the Medical Advisory Board. The gene work of Amplobiotechnologies is being closely followed and a link to the website is found on the MAA site.
A new MAA website was developed. It is one that can do so many things! How fortunate that a Myasthenia sufferer who happens to be a web designer offered to rebuild the MAA website as a gift in preparation for the conference. Our most sincere appreciation is expressed to Anna Wilen-Clarke. The new website is a fabulous asset and development is continuing.
Financially the MAA is in a stronger position following a successful conference and generous donations from several individuals.
Susan White
MAA Chairperson