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 treatment that can save her life. She endured a total of five weeks of plasma exchange and was today granted the ultimate Christmas present – the gift of life.
“It feels like Christmas has come early. This is my Christmas present,” said Sarah.
During her first treatment session, Sarah was unexpectedly joined by her mother and later surprised by her boyfriend with a celebratory lunch.
“It was incredible to have such great support from my loved ones today,” Sarah said.
“I’m excited to be receiving treatment and mad at the same time, because this time next year the aHUS community will be left in limbo and may no longer have access to the treatment.
“We have come so far, but the fight isn’t over for other patients who aren’t flaring,” said Sarah.
According to the new Soliris PBS listing criteria under Section 100: Highly Specialised Drugs Program, aHUS patients must experience a potentially life-threatening aHUS flare before proving eligible for access to the life-saving treatment.