Blog

Prompt access to life-saving treatment saved little boy’s life, MELBOURNE – December 15, 2015

The youngest of three siblings, Joseph, 3, Melbourne, had led a happy, healthy and active life until being diagnosed with the potentially life-threatening ultra-rare blood disease, atypical haemolytic uraemic syndrome (aHUS) in August, 2015. When his mother Sarah, 41, picked up Joseph from kindy on August 5, 2015, he appeared...

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aPSGA founder & President fighting for her seven year old son’s right to life, MELBOURNE – December 15, 2015

In January, 2009, then six-and-a-half month old Ashley, now seven, became increasingly agitated and unsettled. This uncharacteristic behaviour prompted his mother, Kerri, 37, to seek prompt medical attention. Kerri’s “perfect baby boy” was subsequently diagnosed with anaemia, and she was advised to take him to hospital straight away. It was...

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aHUS & double lung transplant patient rejected by ‘ERG’, CAIRNS – Dec 15, 2015

Since receiving a double lung transplant for cystic fibrosis in 2013, medical receptionist Sarah, 29, Cairns, has been battling the ultra-rare blood disorder, atypical haemolytic uraemic syndrome (aHUS). On December 17, 2014, following kidney failure after a trial period off her regular maintenance therapy, Sarah received subsidised access to Soliris...

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The Hon. Tony Smith MP to plead the aPSGA’s case in the corridors of power – November 30, 2015

A year has passed since seven year old aHUS patient, Ashley Grey, Melbourne, was granted access to government-subsidised Soliris (eculizumab) through the Pharmaceutical Benefits Scheme (PBS) Section 100: Highly Specialised Drugs Program (HSDP). Ashley received his last subsidised dose of the life-saving medication on Thursday, November 26, 2015. His mother...

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Doctors, not Government, should determine patient access to life-saving Soliris: a mother’s perspective – September 13, 2015

In October, 2012, Holly, now 10, Melbourne, was diagnosed with the often devastating, ultra-rare blood disease, aHUS. He only treatment option at the time was plasma exchange. For the eight months following her diagnosis, Holly’s mum, Linda, watched helplessly as her daughter lived with a catheter in her stomach, and...

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