Myasthenia Alliance News Update


There are many messages about the important work of the MAA and how the team is hard working but often we receive feedback indicating that people don’t really understand what we are doing with our three hour meetings and jam-packed agendas.

The MAA workers are drawn from the Association Committees. This ensures that they fully understand the operations of the State Associations and more importantly, what is being done to support the individuals who take up membership and who have health concerns. All MAA board members do experience Myasthenia themselves but still choose to volunteer under two umbrellas.
With the first hand knowledge gained from spending time with the membership, the MAA team apply this to working with Federal Government policy makers plus industry partners and researchers to facilitate and enhance conversations relevant to our community. We are amazed at how many acronyms we need to learn and how many different government departments are involved in the regulatory process. We are delighted that researchers are finding the MAA as a contact point and how impressed they are that we can take a positive attitude confident of supporting the potential work. The MAA team also keep an eye on what is happening overseas. We are supported by a highly skilled medical advisory board to ensure that all engagement is suitable. Without a strong following from the Australian Myasthenia community we would not be able to take this lead. Researchers are impressed and empowered by the number of survey responses we can achieve. The MAA is a partnership of us all!
The MAA Board consist of the two Sate Association Presidents – Carol Buchanan and Natalie Windle. This is important as the work must align with the objectives of the State bodies. Natalie is currently the MAA Secretary and collating the large amount of correspondence is a big task. Supporting these ladies is Glenda Bidner from NSW plus Craig Streatfeild and Lisa Wright from Q’ld. Many will have spoken with Glenda or Susan as they answer the Freecall numbers. All team members are currently working with Industry partners on specific projects and lucky Craig handles the IT challenges which occur regularly. We are a strong team on a small budget and more help would always be welcomed.
Please see the following article prepared by Natalie after she represented the MAA at a very significant conference in Adelaide. Her time there was important as she engaged broadly and brought home many learnings for the MAA team to utilise.
Kind regards as always.
Susan White, MAA Chairperson.

Health Technology Assessment International (HTAi) global conference in Adelaide

MGNSW President and MAA Board Member, Natalie attended the HTAi (Health Technology Assessment International) conference in Adelaide from 24th to 28th June 2023. This was thanks to a successful application for a grant from Patient Voice Initiative to attend this important conference on behalf of the MAA. Some of the key themes and messages included the importance and value of patient involvement and empowerment, timely and equitable access to medications/treatments, how to best collect and present data including qualitative data, real world evidence, and patient reported outcomes, and capacity building and training for patient organisations and representatives, noting the existing examples and resources.

HTA is a systematic and multidisciplinary evaluation that uses scientific evidence to assess the quality, safety, efficacy, effectiveness and cost-effectiveness of health technologies and interventions (ie. medications/treatments/medical devices). Australia is currently undertaking an extensive review of our HTA policy and processes and the MAA has made a submission on behalf of the MG patient community. More information is available here

Natalie Windle