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Wednesday, 24 September 2008
Page: 8545

Mr RAMSEY (12:42 PM) —I rise today to speak to the Australian Organ and Tissue Donation and Transplantation Authority Bill 2008 to establish the Australian Organ and Tissue Donation and Transplantation Authority. Organ transplants are one of the miracles of modern science. The act of being able to take working parts from one person at the point of death and transplant them into another to give them a chance at life is a wonder. It is a gift of life.

At any given time in Australia, there are around 1,800 people who are on waiting lists for transplants. For many of them, life can be a misery. All of us hope that we will never be in the position to help firsthand by donating our organs and that we will all live a full and happy life, but the chances are that one of us may be. If we have not discussed the possibility with our families, if we have not made the commitment to register as an organ donor, if we have not considered how we can give someone the gift of life when we are leaving ours behind, then we will miss the opportunity.

Today I would like to talk about a couple of friends: one who made a donation and one who received one. Peter Stutley was a good bloke. He was a good family man who had worked in any number of different manual labouring jobs as a farm worker and a machinery operator. He would go wherever he had to go to find work, and you could be sure that he would give you value. You could also be sure that he would always give you a hand if you needed it. He had married a little later in life, at around 40, and had established a great young family of three boys with his wife, Marilyn. He had spent a number of years working at Moomba, in the state’s far north, making sure that his family was well established and provided for. He enjoyed the work and was popular with his workmates. Tiring of the travel and desiring to be closer to his boys as they were growing up, Peter made the decision to return to Kimba and go back to work as a farm worker. He was good at the job and enjoyed living at home on a full-time basis and being around to help encourage the boys, particularly on the sporting field.

One day Peter had been sent on ahead to drive some machinery to one of the farm properties. His employer was coming along behind to pick him up. He arrived at the destination and, like any good worker, he found something useful to do. Exactly what drew him onto the shearing shed roof we will never know, but we think probably it was to fasten down some loose iron. We do know there was a fall and, when his employer arrived, Peter was lying severely injured on the concrete. By late that evening he had been transferred to the Royal Adelaide Hospital and it became apparent that Peter was not going to recover.

What was it that just six weeks before had led the family to discussing organ donorship? Who knows? However, we do know that that was exactly what happened. Peter and Marilyn had discussed the issue and he had made it abundantly clear that if he had no further use for his organs then they should go to someone who did. At a time of incredible stress, Marilyn and a great lifelong friend, Marie, acted on Peter’s wishes. Marilyn speaks very well of the hospital, the doctors and the counselling both then and since. She did say, though, how important it is that we register as donors, as she spent considerable time and emotional effort in convincing those concerned that this really was Peter’s plan.

So the decisions were made and the family sat through the agonising wait for Peter’s body to shut down. Around 11 o’clock on Sunday evening, Marilyn and Marie needed a rest and found a bed. Little more than an hour later they were woken with the news that he was expected to pass away in the next couple of hours. Somehow the right instructions had not been left to the duty doctor and he was preparing for a total shutdown. If his organs actually ceased functioning before they were harvested, all would be lost. You can imagine the torment as Marilyn and Marie struggled to convince the duty doctor of what needed to happen; otherwise, all of the effort and tough decisions of the last few days would be lost. Anger, grief and frustration flooded over them. It was a stuff-up that no-one should have to deal with. They prevailed, but it was one of the glitches no-one should ever be put through.

In retrospect, Marilyn is fairly forgiving about this incident, as all of the rest of the process had been well-managed, but is determined to suggest something to make sure it never happens again. Her suggestion is: once all the appropriate decisions are made, a highly visible and recognisable symbol should be attached to the hospital bed so all staff know exactly what is to happen. If new staff come on duty, there should be no room for human error; all should be plain and obvious. I look forward to passing this advice along to the new authority once it is established.

Marilyn and Marie overcame the difficulties. They dealt with the stress, grief, loneliness, frustration and the agony of losing Peter, and his wishes were carried out. Peter’s corneas, kidneys, heart valves, lungs and long bones went to six separate recipients—gifts of life or huge improvements to life quality in all cases. All this has given Marilyn great comfort that Peter’s untimely and unexpected death has brought something good to these people. Adjustment to life without her mate has been difficult but she is greatly strengthened by the thought that, in one way, nothing has changed: Peter is still giving someone a hand. She has become a strong advocate for organ donorship and continues to speak up for the cause.

The second story I want to tell is of a vibrant young woman with incredible energy who waited years for a kidney transplant, who in sheer desperation advertised nationally for a donor and who had made the decision that, if somewhere in the medium future she could not find a donor, she would give up on treatment. As with many on long-term dialysis, Nancy’s life revolves around that community. She says nearly all her friends suffer from kidney disease, have received organs, have donated organs or are family of those groups.

We all know someone on long-term dialysis. It keeps you alive, but only just. Your body is continually being drowned in life’s toxins. Just the loss of time, as sufferers can spend up to 20 hours a week hooked up to a machine, is an enormous drain on their lives. This is compounded by a lack of energy and general illness. The normalities of life—holding down a job or ever taking a proper holiday—are almost impossible to maintain. The things the rest of us take for granted become high-water marks in their lives.

Nancy is no ordinary young woman, though. So, while she dealt with her own problems, she set about making life more tolerable for other sufferers. Every year Nancy organises a one-week ocean cruise for people on long-term dialysis. This requires machines, volunteer doctors and nurses, and money. She makes it happen—fundraisers; corporate support; and volunteers, to help on the cruise and to raise money.

As I said earlier, Nancy was not prepared to just sit down and let whatever might happen come to her. After an earlier transplant, which was rejected, she spent years on dialysis awaiting a suitable donor. Advertising for a kidney took courage. She became something of a celebrity overnight. But, as she said to me at the time, ‘If I can’t find a kidney in the next few years I will give up.’ The strain of the forever-waiting list and the disability of life on long-term dialysis would get anyone down. Nancy was not only intent on fixing her problems, though; she was also raising awareness in the community. Her life has been serving others. She is quite a remarkable lady. I might point out that Nancy’s services to the dialysis community have been recognised with an Order of Australia Medal.

Nancy got her transplant—in the end, from her sister-in-law. It is worth reflecting on the contribution many family members make to help out their loved ones. But there would be no need for this sacrifice if we could only raise the public profile of this issue.

The change in Nancy’s life has been enormous. The very first time I saw her after her operation, only weeks afterwards, the transformation was immediately apparent: her skin glowed; she looked years younger; her energy and zest for life was on show for all to see. Nancy is going on doing all the things she has been doing for years with her group Dialysis Escape Line Australia. In addition, she has had the opportunity to travel—something which, apart from the cruises, she had longed to do for years.

What this story tells us of is the determination of some in our community to achieve change—and change is what we need. The tragedy is, of course, that too many Australians are dying, or are suffering terrible health, when there should be plenty of available organs if we could only promote the practice of organ donorship and provide the right support and advice for those dealing with what is always the most difficult part of their lives.

This bill, establishing a dedicated organisation for the promotion of organ donorship, is a good idea. Australia has a very unfortunate record of performance in this area. Top-performing nations—including a number of European countries and the United States—operate in the range of 20 to 35 donors per million of population. Last year Australia managed just nine. At the top of the list is Spain, with 34.3. In fact, there were just 198 donors in Australia last year, resulting in around 600 recipients having a decent chance at life. It is worth noting, however, that around 50 per cent of the families approached to donate do consent. At first glance, this would sound very high, but with less than one per cent of deaths resulting in the chance of viable organs being available, we do have the scope to at least double our performance.

It is a sad fact that around 2,000 Australians are currently awaiting a transplant, and each year hundreds die because of the shortage of donors. I might say that, just recently, I lost a friend who had waited many years for a heart transplant, whose body was so weakened by the experience and by the treatment of the years that she actually died on the operating table, after waiting all those years for that transplant. We can only think what may have happened had that organ become available earlier.

The European nations largely have a presumed consent rule—that is, a person may elect to opt out but, in the case where no preference has been stated either by the family or by the person, their organs may be harvested. It is a quantum jump from our current attitudes in Australia to this position, but it is a position I will support if we cannot significantly lift our rates—one which I will consider in the future.

South Australia has the highest rates in the country at 17 donors per million—almost double the national rate. The state has largely adopted the Spanish model, minus the presumed consent. This proves that there is much we can do on a national basis, and hopefully the formation of the Organ and Tissue Donation and Transplantation Authority will achieve this.

I draw my remarks to a close by calling upon all Australians to make a commitment to give the gift of life to someone else in the event that they have finished with theirs. The Authority will not solve all the problems, but it must make a difference. If not, we shall want to know why and find something that will.