aHUS in the media

Federal Health Minister pledges aHUS patients will continue to receive government subsidised access to treatment if doctors’ deem medication essential – September 18, 2015

Radio host, Jon Faine, 774 ABC Melbourne interviewed Federal Health Minister, The Hon. Sussan Ley on his program this morning, regarding the government’s plans to continue providing aHUS patients with subsidised access to Soliris, one year post- PBS listing. Referring specifically to aHUS patient, Katherine Marshall, Melbourne, Ms Ley denied...

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UK media raise concern at aHUS patients accessing Soliris through a “loophole” – June 4, 2015

There has considerable fanfare recently regarding a UK public campaign suggesting aHUS patients are accessing Soliris (eculizumab) through some kind of government “loophole”. The campaign follows a letter penned by 12-year-old Abi Longfellow, who is living with Dense Deposit Disease – a rare condition that stops the kidneys from filtering...

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Debbie’s story – Fighting to access Soliris for all Australians in order to qualify for a kidney transplant – April 23, 2015

July, 2015 will mark 12 years since, Debbie Basham, 53, Cairns, was diagnosed with the ultra-rare, life-threatening disease, aHUS. “Back then, so little was known about the disease, that any information whatsoever on aHUS was extremely difficult to find,” said Debbie, who is also Treasurer of the aHUS Patient Support...

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The Fight for Soliris in Canada

Michal Eygenraam, 49 was diagnosed with atypical Hemolytic Uremic Syndrome (aHUS) in 2011, which led to kidney failure and reliance on dialysis for eight hours a day, five times a week to stay alive. In 2006, Michaels’ wife, Margriet donated her kidney to him following an incorrect diagnosis. If Michael...

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Treatment a real life-saver – Yahoo 7, Feb 26, 2015

Text by Clare Kenyon February 26, 2015, 7:57 pm Reaching his 101st life-saving infusion, Esperance man Garry Wilson says life is better than ever. It was an unusual milestone for Esperance man Garry Wilson when he went in for his 101st Eculizumab infusion this week. The fortnightly treatment, normally called...

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