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Wednesday, 5 March 2014
Page: 1705


Mr SNOWDON (Lingiari) (13:40): Seventy Australians suffer from the rare and life-threatening disease, atypical haemolytic uraemic syndrome. A submission has been made to the Pharmaceutical Benefits Advisory Committee by the aHUS Support Group with help from the patients' treating physicians. Most patients suffer from end-stage renal disease and other organs become affected. Supportive treatments, including dialysis, plasma exchange and organ transplants, are not effective in the longer term. Most patients are refused transplants because aHUS destroys 50 to 80 per cent of new organs within two years.

On the other hand, the drug Soliris has been shown to be an effective treatment. Ten aHUS patients being treated with Soliris, supplied compassionately by the manufacturer, have significantly improved renal function and overall health. One patient, 19-year-old university student Isabelle Ruiz, benefitted from one month of Soliris courtesy of her treating physicians at Royal Melbourne Hospital. In her words:

Soliris is the only treatment for aHUS and if people need it they should be able to get access to it. It is quite an amazing treatment. It definitely saved my life.

The submission requests the Pharmaceutical Benefits Advisory Committee recommend that Soliris be funded immediately through the Life Saving Drugs Program. The committee is due to decide by 24 April. I strongly urge the committee to find in favour of the submission and to do so with utmost expedition, making Soliris available to those patients who so seriously need it. (Time expired)