Important notice – how to secure renewed access to Soliris

It has been a huge week of highs and lows for the Australian aHUS community following the Federal Health Minister’s announcement on December 16, 2015 to extend patient access to Soliris (eculizumab) from 12 to 24 months before a clinical assessment is required to determine treatment continuation or withdrawal.

This good news has been met with huge relief by members of the aPSGA, including Treasurer, Ms Debbie Basham, who stated “The Federal Health Minister’s and PBAC’s decision to grant aHUS patients with another 12 months access to Soliris will provide us with a much welcome break over the Christmas period. I am so looking forward to it.”

However, the past couple of days post- the Minister’s announcement have proven confusing for many treating physicians and aHUS patients alike, with regard to the process of securing renewed access to Soliris.

Reportedly, Soliris will not automatically be available to aHUS patients. Rather, the patients’ treating doctors must contact the Pharmaceutical Advisor to Schedule 100 of the PBS in order to reapply for the treatment. Treatment access should then prove immediate.

Please ensure that you pass this information onto your treating physicians. For any further queries, email

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