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Posted on Tuesday, November 23 2021

In  March 2019, more than two and a half years ago, an MGAQ member, who lives in Regional Qld, contacted the Association to share a story. The member's family had made contact with the local Federal Member hoping to receive some support in accessing a particular medication at a reasonable price. The medication was Rituximab (a B cell suppressing medication) and it was not PBS supported for myasthenia patients. Local Federal Member, Keith Pitt, joined with the Association and also Dr Kuyler, to write to Minister Hunt.  A thoughtful reply was provided explaining the obstacles to the request and indicating the possible limited pathways a patient may consider. The Federal Government could not assist. The Pharmaceutical Company did not have a suitable process and the Q'ld State Health Department option involved gaining access through the RBWH in Brisbane. This was not likely and would be a minimum two year process. The final option was to fund it privately. The anticipated cost (at this time) was $16,000 every six months. 
The MGAQ joined with the federally focused Myasthenia Alliance Australia (MAA) to pursue this disparity. Why was it that a drug which was in use and proving to be effective for patients with Myasthenia, be available in such a limited way. Patients with Rheumatoid Arthritis could receive the medication via the PBS. What were the stumbling blocks for our condition? The MAA Medical Advisory Board representative, Dr Stefan Blum, agreed to assist the MAA in writing to Minister Hunt about the situation. A recently published Journal Article showing the benefits was included. It seemed like such a convincing case. The reply once again highlighted the obstacles and suggested the usual alternative approaches. Again, the MAA explored these recommendations and dug deep to gain insight and information. This next process took a year of dedicated persistence. It resulted in a second letter to Minister Hunt indicating and explaining in detail that the suggested pathways were unachievable.
The MAA engaged the support of Rare Voices Australia (RVA) in approaching the Minister directly and also his Office. Thanks to Nicole Millis (RVA CEO) the MAA were able to fully explain the limitations of the process. Concurrently, A National Strategic Action plan for Rare Diseases was being developed. It was launched by Minister Hunt February 2020. This plan calls for the repurposing of medications - a process to allow alternate pathways. 
Finally in October 2021 the PBAC was able to make the recommendation for Rituximab to be made available via the PBS to conditions such as Myasthenia Gravis. The process is now in place and it is hoped that Specialists will soon be able to offer this medication to ALL myasthenia patients who may benefit and that the patient will incur no more than the maximum $41.30 PBS charge. 
The MGAQ reached out broadly across Queensland and the MAA more broadly across Australia. Great support and understanding was received from many of our politicians as they began to understand the need. The included photos show the the joy of this important win for A/Prof Stefan Blum, Keith Pitts MP, Trevor Evans mP, Nicole Millis RVA CEO, MGAQ member Vic Andressen and his daughter-in-law Lyn Toft, MGAQ Committee member Denise Hannay and Susan White representing the MAA Board. We know however, that many more people who gave this quest their full support are also celebrating. For the patients this will benefit, there is a sense of relief and hope.

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