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Posted on Tuesday, September 29 2020

What is the latest on the quest to have more equitable access to Rituximab by seeking inclusion of this medication on the PBS for people with Myasthenia?
s discussed regularly throughout newsletters during the past two years, we have approached the Federal Government and the supporting authorities in regard to making Rituximab available to people with Myasthenia via the PBS. Our respectful and well considered approaches have resonated with the Government and with the Rare Voices Australia (RVA) organisation. 
As reported by RVA, "The House of Representatives Standing Committee on Health, Aged Care and Sport, Chaired by Trent Zimmermann MP and Dr Mike Freelander MP, has commenced a Parliamentary Inquiry into new drugs and novel medical technologies. The Inquiry will include a particular focus on access to the treatment of rare diseases and conditions where there is high and unmet clinical need. Individuals and organisations are invited to make a submission addressing the terms of reference (TOR) by Tuesday 13 October 2020. 
RVA encourages all stakeholders to make a submission. RVA will be providing leadership around this issue to our stakeholders and support to RVA Partners as part of our Mentorship and Education program. Guided by the National Strategic Action Plan for Rare Diseases, RVA has put together a suite of support materials to highlight the recommendations that have strong support for implementation in relation to the TOR of the inquiry. We have organised background information and a guide for each TOR."
The MAA Board will be making a submission to the Inquiry and feedback from the Myasthenia Community is welcomed.
Whilst this announcement is very exciting, it will undoubtedly involve quite a long process. Therefore the MAA Board will continue to explore options to progress this quest. 
Susan White - MAA Chairperson.

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