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Thursday, 27 November 2014
Page: 9603


Senator BACK (Western Australia) (18:00): I move:

That the Senate take note of the document.

Time will not permit me to speak fully, but I do want to draw the attention of the chamber to the diseases of haemophilia—haemophilia A and haemophilia B.

Before doing so, I just wish to record quickly, if I can, my absolute sympathy to the Hughes family at the loss of their son and brother, Philip, this afternoon. I know everybody in Australia would share that emotion. Our thoughts can only go out to his family and to those associated with him.

It does bring to my mind the shocking disease of haemophilia. It is a chronic genetic disorder caused by having a defective or a deficient blood-clotting factor. I make the point, and I will not long dwell on it, because after many years there is in fact a new long-acting treatment for both haemophilia A and haemophilia B that has come onto the market in our country. Indeed, both of them have now been approved by the Therapeutic Goods Administration but they are not yet funded for use.

We are not talking about large numbers: 2½ thousand people have haemophilia A and about 600 have haemophilia B—mainly boys and men. But, of course, what a tragic and devastating disease it is. Those who do not have any understanding of it might care to read the book April Fools' Day, written by Bryce Courtenay years ago, about his son, who was a haemophiliac and who died on 1 April.

I make the point with regard to the National Blood Authority because for one of the outcomes—outcome 1, in fact—the key performance indicator and the objective is the secure supply of blood and blood products. At the conclusion, I will seek to continue my remarks because this matter requires a lot more attention, except to say now that it rests with the National Blood Authority in the next few weeks and months to make a decision about funding for the new long-acting treatments for haemophilia A and B.

I seek leave to continue my remarks.

Leave granted; debate adjourned.