As promised, the MAA Board have remained focused on their work during the COVID isolation period and are now excited to bring you some updates on the current projects.
The eNID Project!
MSBase wrote to say that they are very delighted about progress on this project. They are finalising feedback from Stephen and Katherine who used the beta-version, and are currently consolidating the final corrections. They have added a COVID reporting form and imagine the project will be ready to launch within the month. This is very exciting indeed and more news will flow over the coming months. Hurray!!!
Growing the team!
The Board is delighted to welcome Natalie to the team of workers. Natalie is a NSW team member. There is room for more workers so do call for more information if you may be interested in joining the MAA Board.
The gene therapy research work being undertaken by Amplobiotechnology is progressing. Patricio, CEO of Amplo, reached out to the MAA for an introduction to fellow patient organisations Worldwide. It is great to report that over 140 emails from the MAA have been sent and some valuable contacts for Patricio have resulted.
A key objective of the MAA is to support research. Making and maintaining contact with sufferers is a key strategy in attracting research opportunities. Evidence of our effectiveness in promoting our reach is to become obvious over the coming months as several research projects potentially come on line. The direction of the current research discussions very much involves on-line questionnaires. It is critical that we as a community, embrace this direction. If a significant response is gathered, the data becomes very useful and has the potential to lead to more detailed projects. I feel that we, the MG community, are to be ‘tested’ over the coming months and I am hoping for overwhelming feedback to researchers that we are indeed very interested in advancing our care. It is recognised that there is a significant sector of the MG community who do not access on-line services. In flagging this to the researchers, they do not have an obvious solution so it is up to us to be very active in finding ways to participate. This may mean asking family, friends or local library staff to assist. For one-off opportunities, it is important that people with MG make every effort. On page 4 of this newsletter the first projects for 2020 is advertised. Allied Health services are under-utilised when it come to our patient cohort. This survey aims to identify the extent of this issue and allow conversations around gaining more help, to be started. The MAA hope you will engage with this worthwhile project and we very much thank the researchers at the University of Qld.
The MAA has liaised with many key stakeholders on a regular, respectful and sustained basis, including the TGA, PBAC, Roche and the Health Minister's office. We have led many conversations around how medications for people with rare disease can be repurposed and approved for PBS support without using the traditional methods which are unachievable with small cohorts. Despite initial promising signs, MAA is concerned that meaningful discussion may have stalled. For this reason, we have asked Rare Voices Australia to now take the lead on this significant issue for rare diseases. Nicole Millis, CEO Rare Voices Australia, will be approaching all key stakeholders, including the Health Minister on our behalf. She will explain to him how the health system has fallen short and she will seek support from the top levels of government, on both sides of politics. The National Strategic Action Plan for Rare Diseases launched by the Health Minister earlier this year, highlights the need for equitable access to medicines with demonstrated clinical benefit for a rare disease, including those that are already funded for another condition. The Action Plan calls for clear processes and pathways for submitting applications for the repurposing of medicines already approved for treatment of other conditions.
Susan White - MAA Chairperson
Follow the work of the Alliance by registering at the website www.myastheniaallianceaustralia.com.au