Make Soliris (Eculizumab) Available for Dialysis Patients with aHUS in Australia.
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Those on dialysis with aHUS in Australia are in desperate need of your help and you can make a difference by signing this petition!
Atypical hemolytic-uremic syndrome (aHUS) is an ultra-rare life-threatening blood disease that can damage major organs like the kidneys, heart, brain, and can even cause death. Soliris (eculizumab) is the only approved drug that can save the lives of those with aHUS. It is saving lives in the US, Spain, France, England, Germany, Russia, Argentina, Italy, and other countries.
On 12/1/2014 the Australian government made the decision to fund Soliris for a small number of aHUS patients who met “defined clinical criteria”. This was great news for those who were new patients with active aHUS. But those who had already lost their kidneys due to their aHUS, and were on dialysis in need of a kidney transplant, have been denied funding. Without access to Soliris, a transplanted kidney would suffer the same aHUS attack as their native kidneys. A meeting was held in March 2016 by the PBAC to discuss funding Soliris for those patients needing a kidney transplant but the PBAC decided against it leaving these patients a life tied to the dialysis machine.
Please sign this petition telling Sussan Ley MP, Minister of Health in Australia, and Professor Andrew Wilson, Chair of the PBAC, that they should immediately provide Soliris to those patients in Australia with aHUS who are on dialysis and in need of a kidney transplant. These dialysis patients just want their lives back and you can help them.
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