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Posted on Tuesday, March 24 2020

News Update March 2020

This month the story is ALL about the exciting opportunity to represent the Myasthenia Gravis Community in Canberra, celebrating Rare Diseases Day along with the Rare Voices Australia team. Witnessing the launch, from Health Minister Greg Hunt, of the National Strategic Action Plan for Rare Disease was a privilege. Strong bi-partisan support and commitment to this Action Plan was made evident in the speeches from Shadow Minister Chris Bowen, Dr. Mike Freelander MP and Trent Zimmerman MP. Nicole Millis, CEO Rare Voices Australia, and Deputy Chair of the Board, Kane Blackman, undertook to keep the politicians accountable for the promises made.

Minister Hunt drew attention to the great uncertainty surrounding a rare disease diagnosis. He discussed the limited data, knowledge and awareness available for these conditions and promised a united and comprehensive policy. He announced an initial 3.3 million dollars for data collection, patient support, research and clinical training.

Nicole explained that achieving this Action Plan had been 10 years in the making. She went on to explain the Action Plan deems that policy be

  • Person centered
  • Give equity in accessibility
  • Develop sustainable systems

She stated that “Effective Policy” transforms people’s lives and hoped that as change begins, momentum is created and action occurs.

There was palpable excitement in the room!

It was wonderful to participate at the launch and to be supported by the senior politicians and by my local member Trevor Evans who wrote to the Minister last March when the call for assistance went out. The photos included here will give some idea of the many people taking a serious interest in this event.

In regard to the MAA’s quest to seek PBS approval for the medication Rituximab to be made available to people with Myasthenia, a response letter was sent to the Minister's Office in advance of attending the launch.

This letter summarised the work that had been undertaken during the previous 12 months and it responded in detail to the suggested pathways that the MAA should explore. It was a very comprehensive letter, which fully explained that whilst all the parties with a responsibility for this decision were engaged with the well-supported question, it is stalled due to current legislation.

Nicole Millis joined me in meeting with the Ministers Chief Advisor where it was successfully communicated that Legislative change is needed. Such change is the responsibility of the Minister. The discussion was progressive and the key issues have now been heard. A ‘next step’ response is expected in the coming weeks.

Reaching out across Australia to local Federal members is now as important as always. Queensland has been well represented by requests to the Minister but sadly, in 12 months of publicity around this project, no Federal Member outside this State has been asked to support this agenda. The MAA requests that people from the MG community right across Australia, actively foster conversation about this discriminatory situation and get behind this work by calling Susan on 1800 802 568 for more information should they be willing to make an appointment with their local Federal Parliamentarian.

To top off a wonderful trip I was fortunate enough to spend time with a few local MGers and I thank them very much for their enthusiastic support.

Susan White – President.

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