Where to begin! The agenda for the recent MAA Board meeting included 29 items of general business! We are certainly spread across many areas of Research, Advocacy and Awareness. It was an exciting meeting as the Board realised the momentum that is now behind our work.
To show how traction has been gained, we have two new research opportunities. The Australian Myasthenia Community showed that it can provide credible and indicative data. In providing 280 accepted responses for the Patient Reported Outcomes Survey, our community demonstrated that we are indeed very interested in research, we do want to support researchers and we are keen to enhance our care. The first of these applications is progressing through a Government funding application process. With constraints occurring due to election mode, news on this project is still to come. The second is now ready for launch! It is the ‘Covid Impact on Myasthenia’ Project.
The ‘Covid Impact on Myasthenia’ Project is an important undertaking. The past two years have seen a variety of approaches taken in regard to management of immune-suppression treatments, vaccination and Covid for people with Myasthenia. Whilst there is certainly no single correct answer due to individual needs, this project by Dr. Katherine Buzzard and Dr. Pakeeran Siriratnam (supported by A/Prof Steven Reddel and others) will capture consensus of care, look at general patient impact and seek out areas requiring greater attention. We are grateful to the Doctors for taking this interest as it is an area of on-going concern for many. Of note is the addition of a questionnaire for the ‘Treating Physicians’. Please see page 3 of this newsletter for more details including how to participate. This survey will only be available for a two month period closing mid-July so please don’t miss out. It is quite short to complete and as our community are now familiar with the Redcap programmes it won’t be a big challenge at all! The MAA will advertise this opportunity in all the usual ways.
The ‘Patient Reported Outcomes Study’ Project continues in the review and analysis phase. Work far beyond the initial brief has been completed and a draft report has been tabled. This report has led to further questions and more in-depth analysis has been requested. There have been some very significant findings highlighted. These need to be thoroughly understood. The MAA do look forward to bringing you information when the work is ready and thank the Project Partners for their high level commitment to the research.
MGBase! Check it out! Please visit the website at mgbase.org (formerly the eNID project). We think you will be impressed. Patient data is growing and successful entry is occurring at Monash Hospital Melbourne, Alfred Hospital Melbourne and Sydney Neurology (Brain and Mind) with Concord Hospital Sydney and Princess Alexandra Hospital Brisbane waiting for technical and ethical issues to be finalised. Additional technical experts have joined the Board and International interest is growing. Please note that this is a ‘Clinician only access site’ and therefore view only for patients.
In February, a letter was sent to Minister Hunt expressing the MAA’s concerns about access to Therapeutic Plasma Exchange for patients with Myasthenia Gravis. This letter was supported by several key Specialists including Dr Reddel. A prompt reply was gratefully received. This matter is a complex issue and the reply covered a range of suggestions. Some action, as recommended in the reply, has commenced. Conversations will be on-going. We took the opportunity to offer good wishes to Minister Hunt in his retirement and to thank him for his support of Rare Diseases via the Action Plan.
The MAA are closely following the progress of both Rituximab and Ruzurgi through the PBAC process. A personal update on progress is next expected in June. We are assured that progress is within a usual timeframe and that we should remain confident.
Thankfully, it is not my plan to go through all 29 agenda items. However, the MAA team sure could use some extra support. The MAA needs to grow it’s operational structure so perhaps you can offer some prudent Secretarial skills or have experience in Government processes. No harm in having a chat with the MGAQ or MGNSW Committee members to find out what may be involved.
Warmest regards, Susan White, MAA Chairperson.
Follow the work of the Alliance by registering at the website www.myastheniaalliance.org.au