As PBAC Chair I am deeply concerned by Alexion’s response to the Minister’s approval of funding for Soliris for the treatment of aHUS. The PBAC recognises the value of this drug in the treatment of aHUS, which is why we recommended it at the full price requested by the company, Alexion. Unfortunately this positive recommendation has been misrepresented, patients have been unduly alarmed and the listing of the product has been further delayed at the expense of very ill patients.

Let me first be clear about what PBAC recommended. We have NOT recommended that all patients must stop receiving treatment after 12 months.

Atypical HUS is a severe and in some patients life-threatening disease. However, it is not a single disease. There are a mix of causes and the scientists studying this disease still do not fully understand it. Treatment with Soliris works in some patients – but in some patients it does not.

For more details, go to: http://www.health.gov.au/internet/main/publishing.nsf/Content/mr-yr14-dept-dept008.htm