A life saving drug treatment for the ultra-rare but fatal blood disorder atypical haemolytic uraemic syndrome (aHUS) is at the centre of an unprecedented funding stand-off in Australia that has left patients in limbo and is being closely watched abroad, experts have said.

The global drug firm Alexion last week walked away from the Australian government’s offer of A$63m (£33.9m; €43.4m; US$55.1m) in funding over five years at full price (A$500, 000 a patient each year) to subsidise its humanised monoclonal antibody, eculizumab (Soliris), under the country’s Pharmaceutical Benefits Scheme. Alexion objected to the recommended terms of use, under which patients would be taken off the drug if the markers of their condition returned to normal; the company wanted patients to be put on the drug for life.

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