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Mr CADMAN (Mitchell) (11.59 a.m.) —In addressing the National Blood Authority Bill 2002, I want to endorse the words brilliantly expressed by the previous speaker, the member for Boothby, who is medically qualified.

I am not, but I believe in the cause he is espousing. I want to record my support for the National Blood Authority. I am against authorities which are needless and an absolute waste of time and money. I believe we ought to be able to have these agreements without establishing new quangos. But if the benefit is going to be to a resolution of the medical difficulties that have not been able to be negotiated since 1997, then it is worth while. I do not know what is wrong with the people who are involved in the AHMAC who have not been able to reach agreement between the Commonwealth and the states for a fifty-fifty cost sharing process for the benefit of the 50 or 60 men and boys who suffer from haemophilia.

I only need to read to the House parts of one letter—a poignant, distressing letter about an individual suffering from haemophilia. I refer to a letter dated 6 March 2001 from Franz Weber. He has given me permission to quote from it. It was addressed to the New South Wales Parliamentary Secretary to the Minister for Health, Ian McManus. He starts with the normal acknowledgments. What we are after here is that factor VIIa should be available for haemophiliacs. Factor VIII is not successful. Factor VIIa, which is a product called NovoSeven, is critical for these men and boys. Factor VIII treatment, Franz says:

has been available for over 30 years. However, because of the inhibitor, this has not been available to me. Factor VIIa has been available for some years but is only provided at the Royal Prince Alfred for life threatening situations and unavoidable surgery.

He goes on to explain that he had three molars removed and did not have a bleed, because he had access to factor VIIa. But then he was walking his dog down the street, the dog chased a cat or some other dog, and he was in bed for two weeks having bleeds in the elbows, knees and wrists, unable to do anything, simply because in that circumstance he was not eligible for treatment with factor VIIa. I quote further from his letter:

I remember, at the age of 16, thinking I should keep a diary. All the interesting people did.

I think we all felt that way at 16. He goes on:

After six months I gave up in despair. It was filled with records of bleeds, the memory of which I wanted to forget rather than remember. However, I did keep track of a number of instances shortly after my experience with factor VIIa.

I have recounted those experiences briefly to the House. Then he goes on to describe his life:

Adolescence was spent outside the circle of peers. No surfing, no bike riding, no sport other than ping-pong at the Broderick House Hospital School for Spastic and Crippled Children, a school not renowned for its academic achievement. At 18 I found myself disabled, totally socially isolated and with no education to speak of.

He goes on:

In the last year of my studies, with an honours degree in sight, 30 years of meaningless suffering caught up with me and the black dog of depression sunk its teeth into my flesh. For almost 12 months I could not write a single sentence, let alone an honours thesis. In 1987 I joined the New South Wales Public Service with the expectation that I would reach middle management before I retired. But being off work for an average of three in every four weeks makes me a non-starter on the management career ladder.

I think that to deny people like this an opportunity simply because the states and the Commonwealth cannot settle a row is absolutely despicable. I am delighted that we are forming this useless quango just for this purpose. I think that, if you read the description of what it is going to do, you will see that it is not going to do much more than is being done now. But, for this reason alone, I support the bill.

Author: Alan Cadman MP
Source: House Hansard - 26th March 2003
Release Date: 1 Apr 2003


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