aHUS in the media

NICE funds Soliris in the UK – January 29, 2015

Soliris (eculizumab) for aHUS has been granted a positive recommendation to be placed on the National Health Service (NHS) in England. On January 28, 2015, exactly two years and nine days after aHUS UK were informed Soliris would be referred for evaluation to the National Institute for Health Care and Excellence (NICE)...

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NICE funds Soliris in the UK – January 29, 2015

Soliris (eculizumab) for aHUS has been granted a positive recommendation to be placed on the National Health Service (NHS) in England. On January 28, 2015, exactly two years and nine days after aHUS UK were informed Soliris would be referred for evaluation to the National Institute for Health Care and...

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An early Christmas for Sarah – December 17, 2014

We are excited to announce that aPSGA member, Sarah, 28 from Cairns has received her first government-subsided dose of Soliris (eculizumab) in Cairns today (December 17, 2014). Sarah was diagnosed with aHUS in April, 2014 and ever since has fought, like other aPSGA members, for subsided access to the only...

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A story that is far too close to home; Canadian aHUS patient lobbying government for access to Soliris – December 9, 2014

Toni Vernon, a 59 year old Canadian mother-of-four, is lobbying her provincial government for access to the only treatment that will allow her to lead a normal, active, healthy lifestyle. Her harrowing story echoes the experience of our aPSGA members for most of this year. In an article published in...

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Media release – PBS listing grants aHUS patients gift of life – December 1, 2014

Media release MONDAY, DECEMBER 1, 2014  FOR IMMEDIATE USE  PBS listing grants aHUS patients gift of life The aHUS Patient Support Group Australia (aPSGA) welcomes today’s (December 1, 2014) listing of Soliris (eculizumab) under Section 100: Highly Specialised Drugs Program on the Pharmaceutical Benefits Scheme (PBS) for the small group...

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Compassionate supply of Soliris to cease following PBS listing – November 17, 2014

Medical receptionist, Sarah, 28, Cairns, had lived her entire life with Cystic Fibrosis (CF) until September, 2013 when she received a double lung transplant. Following transplantation, Sarah visited hospital for weekly blood tests and follow-ups, with a biopsy confirming her treatment had started to compromise her kidney function. While her...

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Esme’s story – November 11, 2014

Esme, 5 Little girl living with aHUS granted compassionate access to Soliris, Perth Diagnosed with the ultra-rare, life threatening blood disease atypical haemolytic uraemic syndrome (aHUS) at nine-months of age, Esme, now 5, Perth was privileged to be granted compassionate access to the only treatment that would ultimately save her...

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