18 September 2015 - A sufferer of a rare and life-threatening condition has called for certainty over affordable access to the only drug available to treat it.

Melbourne woman Katherine Marshall suffers from atypical haemolytic-uremic syndrome (aHUS), a condition only treatable with the drug eculizumab, sold under the name Soliris.

A single dose of Soliris costs more than $5,900, with an average treatment costing $500,000 a year, but the Pharmaceutical Benefits Scheme (PBS) listed the drug in December to reduce the cost to $37.70 per script.

But there is confusion as to whether patients such as 25-year-old Ms Marshall would be given uninterrupted access to the drug.

Doctors told Ms Marshall restrictions in the listing for Soliris meant she would have to go off the drug after 12 months and would only be allowed back on the drug if she became sick again.

For more details, go to: http://www.abc.net.au/news/2015-09-18/confusion-over-long-term-pbs-supply-of-lifesaving-drug-soliris/6786868