Karen Andrews (McPherson, Liberal Party) Share this | Link to this | Hansard source

I rise to speak today about a young girl, 17 years of age, who is very ill. Bianca Scott graduated from All Saints Anglican School in my electorate of McPherson in December last year. Two weeks later she became very ill. Bianca has been diagnosed with Atypical Haemolytic Uraemic Syndrome—aHUS—and remains as an outpatient at Gold Coast University Hospital. This is a rare, life-threatening disease that can damage vital organs such as the kidneys, heart and brain. There is no cure. This hideous disease has affected Bianca's kidneys and her heart.

There are two treatment options available for this disease. The first option is plasma exchange, plasma infusion and dialysis. I understand that this slows the deterioration, but plasma exchange and dialysis are lengthy and expensive processes. Bianca's mother, Tammy, has told me that Bianca has spent up to nine hours per day undergoing dialysis and plasma transfer and that she needs high doses of antihistamines and steroids to counter the effects of plasma and dialysis. This, in turn, further taxes Bianca's kidneys. In aHUS, long-term plasma and dialysis will not mitigate against kidney failure. Should Bianca's kidneys fail, her aHUS strain makes her a poor candidate for kidney transplant.

The second option is a drug, Soliris, that has side effects but is indicated for the treatment of aHUS. Soliris is available through the Life Saving Drugs Program for treatment of PNH but not aHUS. Bianca's mother has advised me that she has been quoted by the drug company between $300,000 and $385,000 for a six-month supply of Soliris. Appeals to the drug company to include Bianca on their compassionate access program have been rejected. Bianca's family, with the support of so many generous people in the community, have purchased some initial supplies of Soliris. Treatment has commenced, and I understand there are promising early signs of improvement in Bianca's health.

There has been a lot of media attention concerning Bianca's plight, and I really do commend the efforts of everyone involved in raising community awareness of this terrible disease. An online petition has been set up which can be found at www.change.org, and I am advised that as of yesterday there were 27,669 signatures on that petition. This is clearly an issue that has tremendous community support. I will be doing everything that I can to have that petition tabled in the parliament. Bianca Scott needs immediate assistance, and I call on Alexion Pharmaceuticals Australasia to urgently reconsider its position and allow Bianca to be included on its compassionate access program.