Archives: August 2014

Federal Member for Fremantle supporting aPSGA plea to expedite funding of Soliris – August 25, 2014

The Federal Labor Member for Fremantle, The Hon. Melissa Parke MP, has just responded to our recent letter informing her about the grave situation facing our members living with aHUS and our urgent need for access to Soliris. In a letter addressed to aPSGA President, Kerri Grey, Ms Parke expressed her shock surrounding the figures pertaining to death and end stage...

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Sarah’s story – “breathing borrowed air” – August 21, 2014

Medical receptionist, Sarah, 28, Cairns, has lived her entire life with Cystic Fibrosis (CF). With only 24 per cent lung function, she has spent a lifetime “breathing borrowed air.” That was until September, 2013 when Sarah flew to the Prince Charles Hospital, Brisbane to receive a double lung transplant. Post-transplant,...

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aPSGA met with Shadow Health Minister today to discuss the urgent situation facing Australians living with aHUS – August 20, 2014

aPSGA President, Kerri Grey met with Shadow Health Minister, The Hon. Catherine King MP today to represent the interests of aPSGA members requiring urgent access to Soliris (eculizumab) to ultimately safeguard their lives. Kerri voiced aPSGA members concerns that while government bureaucrats and the manufacturer continue to haggle over the...

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“Pay for performance” recommendation for Kalydeco – August 14, 2014

Following its review of Vertex Pharmaceuticals’ Cystic Fibrosis (CF) treatment, Kalydeco (ivacaftor), the Pharmaceutical Benefits Advisory Committee (PBAC) has proposed the government pays an individual subsidy depending on benefits gained per each patient. The PBAC recommendation for a “pay for performance” model to fund Kalydeco was made following a stakeholder...

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