CORRECTED VERSION

STANDING COMMITTEE ON LEGAL AND SOCIAL ISSUES

REFERENCES COMMITTEE

Inquiry into options and mechanisms to increase organ donation in Victoria

Melbourne—25 August 2011

Members

Mr M. Viney Ms J. Mikakos Ms G. Crozier Mr D. O’Brien Mr N. Elasmar Mr E. O'Donohue Ms C. Hartland Mrs D. Petrovich

Chair: Mr M. Viney Deputy Chair: Mr E. O'Donohue

Staff

Committee Secretary: Mr R. Willis Research Officer: Ms L. Kazalac

Witnesses

Mr C. Thomas, Chief Executive Officer, Transplant Australia; and Mr K. Green, Chairman, Victorian committee, Transplant Australia.

25 August 2011 Standing Committee on Legal and Social Issues - Reference Committee 17 The CHAIR—We will resume. I have a brief introduction I am required to do. Welcome to this hearing. If I can advise you that all evidence taken at this hearing is protected by parliamentary privilege as provided by the Constitution Act 1975 and further subject to the provisions of the Legislative Council Standing Orders. Therefore you are protected against any action for what you say here today, however, if you were to repeat those comments outside they may not be protected by this privilege. All evidence is being recorded. You will be provided with proof versions of this transcript in the next couple of days. Transcripts will ultimately be made public and posted on the committee's website. We have allowed some time for your opening comments and then we will go to some questions.

Mr THOMAS—Thank you, Mr Chair, and thank you to the committee. It is wonderful to be here today and we appreciate all legislative councils taking an interest in this important area. My name is Chris Thomas, I am the chief executive officer of Transplant Australia. I am pleased that Kevin Green, the state chairman of our Victorian committee has joined me today. I would like to open by saying that Kevin being here today summarises this whole area of organ and tissue donation. I would like him to tell his story, if you do not mind.

Mr GREEN—I reiterate those words of Chris, it is great to be here today. My name is Kevin Green, I am 47. I was on dialysis for 8½ years, for four hours a day, three days a week. I also worked full-time. I was diagnosed with glomerulonephritis when I was 19. In 2007 I was lucky enough to get the phone call to have a transplant. My daughter was only six months old when I started dialysis and to spend time with my daughter was great for me. I took up coaching basketball, football, Auskick coordinator, social club organiser for my football club. I also had the chance to compete at the national games and the World Transplant Games in September. Probably the worst thing about being on dialysis is not having the freedom to get out and about and enjoy life. My downside was my daughter was only six months old when I started and I could not get to see her. By the time I arrived home it was 9.30, 10 o'clock at night.

To do that for eight years was tough; a restricted diet, restricted fluids. After my transplant it was totally a new lease of life. I put on 20 kilos, I was able to work more, totally enjoy life more, and probably my biggest highlight was when I toured with the Australian cricket team with my baggy green in a Test match against the English transplant team in June, and I scored 152, not out, off 107 balls to win the Test match by eight wickets. Also at the World Games I won a gold and silver medal in golf. To be around so many people in 49 countries and be there at the opening ceremony with your blazer on and your akubra sums up organ and tissue donation, just that alone, to be around all those people was inspirational.

The CHAIR—Thank you very much, Kevin. Thank you for sharing your story.

Mr GREEN—Thank you.

The CHAIR—Chris, do you want to say something.

Mr THOMAS—Yes, I have a few things to say and I will try and go through them quickly for you.

Slides shown.

Mr THOMAS—Kevin is one of the 30,000 Australians who have benefited from organ and tissue donation and transplantation over the past 40 years. It is hard to quantify but we believe there are currently about 10,000 people alive in Australia today living with a transplant. Many of those have joined this Transplant Australia, making us the largest body of our type in the world. We started as a sports based health and fitness organisation, but have come to work closely with the Organ and Tissue Authority of the sector on promoting the benefits of donation. Our members are living proof that organ and tissue donation is an important issue and is worth the effort. We have a vision and that is to promote the lifesaving benefits, while supporting the most vulnerable back to the fullness of life. Our mission is to be a strong advocate to promote transplantation to governments and the public and provide support to people who are waiting.

We are often the first group the media turns to when issues about organ and tissue donation and transplantation are in the headlines. There have been some stories recently about all the trafficking, about paying for kidneys and so on, and Transplant Australia has a brilliant name, and the media come to us for a

25 August 2011 Standing Committee on Legal and Social Issues - Reference Committee 18 comment about that. In terms of promotion, we promote the benefits of organ and tissue donation through the Transplant Games. They are held every two years and they were last held in Victoria, in Geelong, in 2006. We also take our message to the public through community events, speaking opportunities and the media. We are building important support tools to help those who are waiting. As at 4 August this year there were 1,590 Australians officially listed, and most of them do it extremely tough.

Families often need to relocate to be near a children's hospital while their child waits. People lose jobs. They struggle psychologically to cope with the concept of transplantation. Knowing that someone needs to die to enable you to live is a very deep and philosophical ethical dilemma that many people face. Our Journey of Hope campaign addresses these issues and is designed to help people from the moment they are told they need a transplant through to their full recovery.

However, we do acknowledge that the greatest challenge we face is to improve our rate of donation across Australia in a sustainable manner. I am sure the committee is familiar with this chart and agree that Australia's rate of donation really is unacceptable. It is about half that of the United States, and 2½ times worse than Spain which was not included in the 2010 statistics. I will put there where you can see the 2009 rates were at. Pleasingly, however, Transplant Australia acknowledges that the rate of donation is improving. If the trend to July continues towards the end of this year, we should achieve 344 donors for the year. In Victoria, rates are up 31 per cent on 2010 rates. We recognise that Victoria really is a stand-out performer in improving rates in Australia.

I would like, if the committee does not mind, for me to make a short comment on the history to this. I joined Transplant Australia in 2007 and it would be fair to say that the organ and tissue donation sector was really a basket case back then. We had eight different organ donor agencies across Australia, all operating under different jurisdictions, each trying in their own way to achieve their goals. There was DonateWest, Queenslanders Donate, LifeGift in New South Wales, Victoria and the ACT, SAODA in South Australia. It really was quite dysfunctional. The former federal health Minister, the Hon. Tony Abbott, had recognised this and established a clinical task force to review our system of donation. Transplant Australia joined the rest of the sector in contributing to that review process, and a comprehensive report and some 50-odd recommendations were published.

In 2008, the then Prime Minister, the Hon. Kevin Rudd, took this reform process much further than anyone had anticipated, and established the Organ and Tissue Authority and implemented a significant reform package. I am sure that the Organ and Tissue Authority earlier today has been able to detail to you the elements of that reform package.

Transplant Australia, in understanding where this nation has been in organ and tissue donation, is extremely pleased and supportive of the reform process. It was not that long ago when we would traditionally say in the media that our rate of organ donation in Australia was only 200 organ donors a year. Now, we have reframed that conversation to say that there are about 300 organ donors a year. The real question that the committee is grappling with is how long will it take for us to be able to state that we are achieving world's best practice of between 400 and 450 organ donors a year. Certainly Transplant Australia believes those goals are achievable.

My first message to the committee today is that, really, Australia should keep going the way it is going. The reform package is working, especially in states like Victoria. Now is not the time for wholesale change. That said, the job is not yet done, and there should be no room for complacency and we welcome this inquiry. Before detailing areas of further work, I would like to comment on the potential benefits of increasing donation. On the one hand we know that there are huge economic savings. If you could give a transplant to each of the 1,136 people currently awaiting a kidney, the net saving to the health care system over a nine-year period, which is the average lifespan of a kidney graft, would be $417 million. I am happy later in our questions to go through that mathematics.

However, the social and family benefits cannot be measured. Scott in Queensland is one example. He has seen his two kids grow up while he has rejoined Qantas as an A380 Qantas pilot. I do not know if any of you know that when you fly overseas there is maybe a kidney transplant recipient up the front controlling the plane. That is a wonderful story. Paul in New South Wales has been able to re-enter the police force. There is a lady in Melbourne, Chris, who has been able to re-enter the workforce as a teacher for an additional 20 years. Jeff,

25 August 2011 Standing Committee on Legal and Social Issues - Reference Committee 19 who we know well, in Queensland has had his kidney transplant for 43 years. He is the eighth-longest surviving kidney recipient. I think of the extra summers he has seen and the fact that he has been able to see his grandkids grow up. Nick in Melbourne has been able to complete his law degree.

Our paper that we provided to the committee identified a number of areas where further work does need to be done. I would like to expand on those and mention two other areas of potential improvement. In the clinical sector, it is our understanding that improvements in the reform process are not universal. In fact they are not even state specific. I have mentioned before, Victoria as a whole is improving its rate of donation. We do recognise that. But the rate of donation varies between hospitals. It is more to do with the enthusiasm and the collaboration that has embraced the reform package, rather than any hard processes. Hospital cultures are very difficult to shift and there are still pockets of resistance in many hospitals across Australia, including those in Victoria.

This is one of the most important areas that we would like to deal with today, and that is we often talk about what is in the reform package? What are the different measures? What are the educational tools that are being implemented? We need to look deeper and think about the human resource element. South Australia, traditionally, has always performed extremely well in terms of organ and tissue donation. When you start to dissect down, why have they done well, it really comes down to some key people who make it happen. The quality of the staff is very important. This is where we think the greatest change can occur in the clinical sector. Often as a sector we call on Australians to do more to support donation; to discuss it with our family and friends; to sign onto the Australian Organ Donation Register. They are all important messages.

However, when it comes to the conversation between the clinician and the family member in that hospital corridor on whether or not they will donate their loved one's organs, that conversation is a two-way street. We believe the manner in which the question is asked, the empathy and the compassion that is shown, they are important components of a successful and positive outcome. It is crucial that the health care profession is trained in the correct manner to achieve that outcome. It is crucial that those with the responsibility of asking the questions are senior and respected professionals, part of the intensive care or emergency department team. We should not underestimate the power of the human resource in the mix. When you have a senior medical practitioner respected by all, driving that process in the hospital, amazing outcomes can be achieved.

In the community sector, as we mentioned in our paper, our family consent rates are still too low. Transplant Australia believes the sector could transplant another 750 people a year if we could improve the consent rate from around 50 per cent, to 90 per cent to 100 per cent. Social marketing plays an important role in addressing issues in the community sector. One of the messages we would like to leave with you today is social marketing in this space works. Every two years, Transplant Australia hosts the Australian Transplant Games in a different city. In 2009 we hosted the World Transplant Games on the Gold Coast with more than 1,000 transplant recipients celebrating from all over the world. Those that are eligible are recipients with hearts, livers, lungs, kidney, pancreas and bone marrow recipients.

You may be tempted to dismiss this as just another sporting event or a tourism event. However, the associated publicity that goes with all of those inspiring athletes demonstrates that social marketing in this area works. You shine a spotlight on the successful outcomes of transplantation, as we have done here today, and you can in fact influence the community's acceptance of donation. On the screen there you have the annual moving total of organ and tissue donation correlated with when the Australian Transplant Games are on. Although some clinicians and so on say, 'It can't be possible,' that grant speaks for itself and says that when there is good publicity out there, when we are focused on it, in the community and in the clinical sector, people are more inspired. Families are more likely to say yes, and donation rates go up. Over the last 10 years with the Transplant Games being held every two years, we know that in a games year, as opposed to a non-games year, on average 117 extra transplants are performed, 117 extra lives are saved.

Transplant Australia also has hundreds of volunteers across Australia and Victoria, just like Kevin, who are only too prepared to tell their story to a university group, a school or community group. This grassroots education is important if we are to change society's attitudes towards donation. This is especially important in our indigenous and multicultural communities. In the six years to 2009, 11 of the 1,328 organ donors in Australia were from an indigenous background. Indigenous Australians have a 25 per cent chance of getting a transplant, as opposed to non-indigenous Australians. They are also 10 times more likely to suffer from

25 August 2011 Standing Committee on Legal and Social Issues - Reference Committee 20 kidney disease. Of the 309 organ donors in Australia last year, 289 were identified from a Caucasoid or an Anglo-Saxon type background which according to the statistics includes people of Greek and Italian origin as well. Four were indigenous; three had a family of Chinese background; four, an Indian background; four, a Malay background; two Vietnamese; and one each from the Philippines, Colombia and Indonesia. Against this backdrop it is also intriguing to note that about six per cent of the people who have donated their organs you could identify from an Asian background, but people waiting for a kidney transplant from an Asian background, represents 16.5 per cent of the waiting list.

Consent: Transplant Australia, in representing those most affected by transplantation, will always view positively reforms which have the potential to increase organ and tissue donation. We naturally view presumed consent with some favour. We agree that presumed consent in isolation to other reforms is not a panacea. However, as the national voice representing those waiting, those who have achieved a second chance, we believe that all legislative measures should be exhausted. Presumed consent can play an important role in helping a country's population better understand that the natural decision to make when a loved one dies is to donate their organs. It can help pave the way for donation to become just another one of life's decision-making processes; similar to getting a driver's licence or getting married or making a will.

We understand that in countries where presumed consent does exist, doctors still ask family members for the final decision. It is part of that end of life care, decision-making process. It is entirely appropriate, as families should always have the very final say in terms of that decision-making process. But it does concern us in Australia that legislators often dismiss presumed consent, stating that Australians are not ready for it. I am not certain that we have ever asked Australians if they are ready for it. As reprinted in our submission, a recent editorial in the British Medical Journal concluded:

When other determinants of donation rates are accounted for, presumed consent countries have roughly 25 per cent to 30 per cent higher donation rates than informed consent countries.

That really is worth closer examination. However, we do believe the community is looking for clear and simple messages about how they can support donation. The introduction of the Australian Organ Donor Register in favour of the driver's licence system was never properly explained. Now, the focus is on family discussion. Transplant Australia would like to make two conclusions regarding presumed consent: firstly, let's give the reform package the opportunities to succeed without imposing this quite radical shift; secondly, if at some stage in the future presumed consent is deemed to have a place in our donation system—and we would be supportive of that—let's make it a national model. For one state to go it alone in isolation to other states would simply perpetuate the confusion that currently exists in the public's mind about how they support donation.

Final issues: there are three other issues that I would like to ask the committee to explore in its deliberations. Living donor rates: since completing our submission, Transplant Australia has continued to work with Kidney Health Australia on a discussion paper examining the introduction of a living donor reimbursement scheme. Last year in Australia, 35 per cent or 292 of the 842 kidney transplants were from live donors. In recognising that the supply of deceased organs will never match the growing demand, it is wonderful to see so many Australians prepared to donate a kidney to a loved one or to a friend. From overseas research it can be concluded that approximately 24 per cent of live donations do not go ahead because of pending financial hardship. About a quarter do not go ahead because of potential financial hardship. In Australia we have had reports of discrimination where employers refuse to allow someone sick leave to donate their kidney to a family friend, their daughter or their son, and they have refused to allow them to take sick leave because, 'You're not sick.'

If we take the overseas experience, it is possible that we could transplant another 70 patients a year in Australia or 25 patients in Victoria, simply by promising to cover out-of-pocket expenses and loss of wages. That should not be confused with financial incentives in organ and tissue donation. It is accepted in many countries across the world.

Capacity: Transplant Australia is intrigued by a scenario where eventually in places like Victoria we will have so many organs that we will not have enough transplantation services to cope. It would be a travesty of the

25 August 2011 Standing Committee on Legal and Social Issues - Reference Committee 21 program if there were not enough surgeons, operating theatres and tissue typing facilities to cope with the extra number of organs. The 505 Victorians waiting for a transplant at the start of this year would also be very much aggrieved by that.

Intensive care beds: in a similar vein, Transplant Australia believes more should be done to understand the impact on donation rates a hospital's underlying intensive care bed availability has. Does pressure on intensive care beds prompt doctors and nurses to potentially miss donors? Is there pressure to release a bed for the next person who can be saved? They are questions worth asking.

Summary: Transplant Australia would like to thank the committee for making the time available for us to expand on our paper. We are very passionate about organ and tissue donation. We are pleased the Victorian parliament has seen fit to establish this inquiry. We are passionate about spreading the word and we would be pleased if one of your recommendations was to help Transplant Australia embark on an education program in Victoria, utilising our vast volunteer network, especially in the ranks of our multicultural Victorians. We would welcome the Victorian government expressing an interest in partnering with Transplant Australia to stage the Australian Transplant Games here in this brilliant sporting state at some stage in the future. We would welcome your ongoing interest to ensure that the reforms in the clinical sector are maximised and that capacity issues and the availability of intensive care beds do not place an artificial ceiling on donation activity. I am happy to answer questions, thank you.

The CHAIR—Thank you very much, Chris and Kevin. I will open by inviting you to go through that financial information again and perhaps to background that a bit more.

Mr THOMAS—Currently in Australia there are 1,592, I believe it is, waiting for a transplant in Australia as at 5 August. I may be two numbers out there. Of those, 1,136 are waiting for a kidney transplant. They are all on dialysis. Dialysis costs $61,659 a year to keep someone on dialysis. A conservative estimate of the lifespan of a kidney graft is nine years. That is an English figure. In Australia there are some statistics to say that the kidney graft will survive, on average, 14 years. Let's take the conservative nine years. With dialysis costing $61,659 a year, that is a cost per patient of $554,931 over that nine-year period. The initial cost of a kidney transplant in the first year, to do that transplant, is $81,549. In subsequent years the medication cost is $11,770. Over that nine-year period, the cost of giving someone a transplant is $187,479. The net saving therefore of the $554,000, the half million, compared to the $187,000, is $367,452.

If you times that by the 1,136 people waiting, you get to a cost to the health care system of dialysis, as opposed to transplantation, of $417,425,472. There are significant benefits of transplantation versus dialysis. One of the points we would wish to stress—and Kevin may disagree with me—is that you can survive on dialysis. Some people do not call it surviving, it is not a comfortable life. People lose jobs, it has a tremendous impact on their lives, but at least they are able to be sustained while waiting for a transplant. We are obviously very concerned about more than 80 people a year who die on the transplant waiting lists because hearts, livers and lungs do not become available. That is not to assume that people who are waiting for a kidney transplant do not also die—tragically that also occurs—but at a lesser rate because of the maintenance process of dialysis.

The CHAIR—I will pursue the financial and economic issues a little bit further because you have subsequently made some comment on the cost to people—the live donors, if you like—who donate, and the lack of reimbursement for them and the sick pay issue. I was interested in you expanding on that element as well for a moment, if you can.

Mr THOMAS—There are many countries now overseas—New Zealand, the United States, and I am happy to supply a further list to the committee for its deliberations—where a living donor reimbursement scheme exists. Some of the living donor reimbursement schemes include only the out-of-pocket expenses. The cost of parking at the hospital—there should not be many medical bills but there are some medical bills, the work-up procedures and so on, probably about $2,000 or $3,000 worth. People who donate a kidney can take anywhere between three weeks to nine weeks off work and are therefore unable to work. Many of those schemes include a loss of wages component as well. There is some concern in the medical profession that if you head down that path it is a financial incentive program. Transplant Australia is a signatory to the Istanbul Convention on Organ Trafficking and we believe there should not be any financial incentives involved in

25 August 2011 Standing Committee on Legal and Social Issues - Reference Committee 22 encouraging people to donate a kidney. There is often talk about $20,000 or $30,000. What is a kidney worth? We believe that is a very slippery slope that we should not proceed down.

I recall seeing a National Geographic documentary about this where a village in India, all of the women were encouraged to donate a kidney and they were promised $40,000 each and ended up with $400 each. They all showed their scars of the kidneys they had donated. We need to be very clear that there should be no financial incentives. However, one of the studies in America said that 25 per cent of people do not proceed with donation because of that impending financial hardship. Kevin is a painter, a self-employed businessman. If he had been on the other side of the equation, would he have been able to take that time off work to give his son, his daughter or his sister or brother, that kidney. For many people they would like to, they have the right match, but they are unable to financially.

A living donor reimbursement scheme which might cover, say, between $5,000 to $10,000 per transplant would cost a minimal amount of money. We could transplant another 70 people in Australia. If we conservatively say that that was a cost of $5,000 each times 70 people, and then you obviously would have to offer it to some of the people who already donating their kidneys. The cost is a minimal outlay for a significant increase in donation rates.

The CHAIR—Thank you.

Mr O'DONOHUE—Mr Thomas, could I ask you to expand on your comments about pockets of resistance in some hospitals. You mentioned, including Victoria.

Mr THOMAS—The hospital cultures are probably the most traditional culture that you can think of. Transplant Australia is very supportive of the reform package. In the haste or urgency to get that reform package out we are concerned that the communication program around it into the hospitals has not been universal. Are all of the hospital administrators on board? Are all of the ancillary people—the people associated with it but not directly associated—are they fully on board and understanding what the new DonateLife agency is trying to achieve; what this hospital medical coordinator is trying to achieve. It is a very challenging program for some of the intensivists and the emergency medicine doctors. The Hippocratic Oath is, 'First do no harm.' It is a challenge for them when they are working in the intensive care unit and their entire existence is to save that life, and when do you come to the realisation that that life can no longer be saved and how do I, as that intensivist, change my thinking into now having a discussion with the family about organ and tissue donation.

The CHAIR—If I could interrupt there. The evidence we received previously was that a doctor cannot have that discussion with a patient. It is done by a separate practitioner for those exact reasons. Isn't that issue alleviated by that fact that if I was your doctor or you were my doctor, we could not have that discussion, it would have to be a separate practitioner? That was the evidence as I understood it earlier.

Mr THOMAS—My understanding is that the new medical specialist positions are embedded into the intensive care unit. Someone might be an intensivist but working point 2 of an FTE being paid under the DonateLife agency system. They do have an interest in that area. I think we are slightly at cross-purposes from that evidence that you have been presented. The background is we are a national community organisation, obviously with a great interest in the space. Are we working in the hospital system? No, we are not. But the entire purpose of the specialist medical positions is to embed people into the hospitals who are able to have that discussion. Maybe we could seek some clarification on that, and I would be happy to come back to you.

It is important for those people to be well respected and well regarded within the hospital system. One of the areas that the committee should examine further—and this is good news for Victoria. The model that has been adopted here, in terms of those hospital specialist medical positions, is a slightly different model to what has been adopted in New South Wales. In New South Wales the money was available to put those specialist medical coordinators into the hospital and they have gone and employed someone who is solely responsible for that space. In Victoria they have changed the model slightly and they have people working in the intensive care as an intensivist but also, as I said before, point 2 or point 4 per cent FTE being paid, focused on organ and tissue donation.

25 August 2011 Standing Committee on Legal and Social Issues - Reference Committee 23

I think that model is one of the underlying reasons why Victoria is performing better because one of the things I would like to leave you with today is that emphasis on the quality of the people who are employed to focus on this in the hospital system.

The CHAIR—Thank you.

Mr O'DONOHUE—Kevin, can I ask you to describe to us the process—once you have had the transplant—of recovery and how long it takes before you are feeling like your old self, so to speak?

Mr GREEN—I still remember the day, 22 August, which was last Monday, four years ago. It was 12 midday and I was supposed to dialyse that day because my potassium levels could have been a little bit high because I dialyse Monday, Wednesday, Friday. I went to the hospital, I was there by 1 o'clock. They took a chest x-ray, I was cleared. I did not have to dialyse. I walked into theatre. I come out of theatre probably four, five hours later. When I come to I was a changed person straightaway. I did not have any aches and pains in my legs, in my knees. I went back to my room and I still remember the nurse saying to me the next morning—she come in every hour—'You could have put out a bushfire. I changed your bottle every hour and a half,' the kidneys kicked in. I was out of bed the next morning. Five days later I was home. The kidney worked straightaway. I still remember going home in the car. I had to stop seven times to go to the toilet. I went to clinic every day for six weeks. I did not work for three months and I was back to work after three months climbing ladders.

From there I went for six weeks, and then after six weeks it was every second day, then every third day. Now I go to the clinic every six weeks to get a blood check. I was lucky. I had a speedy recovery. Some people are not that lucky. The kidney goes to sleep and it takes a while to kick in. I have had many good friends wait and wait. They say to me, 'How come yours worked?' I said, 'You can't go by mine. I couldn't go by the previous person's. It's you, the kidney is in you, and it's up to the kidney if it goes in and works straightaway.' I had a friend who had to wait three months before the kidney woke up, and he could work. I said, 'It's not all about getting back to work and stuff, you're healthy, you've got a kidney transplant, wait for it to kick in.' Today he is back to normal life, and it has been just on four years for him as well. He sits back and reflects on that saying, 'Why, why? Why yours? Why mine?' He leads a normal life. I was quite surprised with mine that it did work straightaway.

Mr O'DONOHUE—Do you have to continue that six-week process?

Mr GREEN—As the years go on it expands. I go to the Royal Melbourne every six weeks and then I go to see my own private doctor. It is six weeks and soon it will be two months and then three months. Although I have had the transplant it is always in the back of your mind that you cross your fingers and every day is a new day.

Mr ELASMAR—Thanks Chris and Kevin. Do you know where it came from? Do you know the person—

Mr GREEN—That is a hard one. We would love to know.

Mr ELASMAR—My question, Chris, is regarding this number you gave us before, a lot of numbers, and of course the numbers will increase through educating families and the people involved. But let's say we have enough people to do and enough donors, can hospitals and doctors do this? Do we have the capacity? Do we have all this available if we have the numbers from donors to patients?

Mr THOMAS—Having the opportunity to read the submissions to the committee which were published on the website, it was an opportunity for us to look through some of the other papers, and we were concerned about the capacity issue. In Australia we are blessed with this two-tiered federated model of government and we have the federal government which has put significant resources into the donation side of the equation and it is incumbent on the state governments to match that on the transplantation side. My understanding is in Victoria the government here recently announced additional money in the budget for further transplantation services. It goes on to say that as the numbers of donors increases, the work of the

25 August 2011 Standing Committee on Legal and Social Issues - Reference Committee 24 transplantation services will correspondingly increase as well. It is a very good question that you raise. We are still not at the optimal number of donors. It is a guessing game, a little, to know whether or not we will in fact have enough transplantation services.

We do know anecdotally there are less doctors training in the transplantation field. There are less surgeons training in the transplantation field because inherent in organ and tissue donation and transplantation is that the donation generally becomes available at 2 o'clock in the morning and that is when the transplant has to occur. The surgeons that become involved in this are very passionate and very committed people. As life changes I know they are struggling to have as many trainees and so on who want to work in the transplant field. That is a significant concern for the sector. In some of the states there is tremendous pressure on our intensive care beds. If you have a patient who is clinically brain dead on a ventilator in an intensive care unit and you are waiting for the family to arrive and perhaps one of the family members has to come to country Victoria and is taking a little bit more time to get there, you need to give that family the time to be able to discuss organ and tissue donation. It is an extremely fraught and emotional time.

We know that where families have previously discussed donation they are much more likely to agree. It is a bit like a jury; it only takes one member of the family to be against the donation because of a whole range of different reasons that potentially that donation will not proceed. Over here in the hospital in that corridor we have that family considering that issue and waiting for someone else to arrive to contribute to that decision. In the emergency department we have some car accident victims arriving and they need that intensive care bed. That is where we believe the pressure occurs, and decisions can get made to not proceed to donation with that person, to turn the ventilator off and say, 'Look, we couldn't do it because they need to free up that intensive care bed for the next person.' Any intensivist or any emergency medicine doctor in that situation is doing the right thing. They are saving the next life. That is what they are there for. Yes, we are concerned about capacity issues and we think that does need to be looked at closely by the committee.

Ms CROZIER—Thank you both for presenting to us today and particularly you, Kevin, for sharing your story with us. Chris, you mentioned the successes of social marketing that has been undertaken and also the success of the Transplant Games. In your submission you state that you would recommend the Victorian government consider establishing a funding agreement in Transplant Australia for future promotions. I am wondering how that would work in conjunction with the work that DonateLife does, and is that working with DonateLife or is that completely separate? Would you see yourself undertaking those promotions and how government can assist in what you are trying to achieve?

Mr THOMAS—The work of the DonateLife agencies is very important in terms of speaking to the general public and promoting the whole concept of organ and tissue donation. One of the unique aspects of the Transplant Games is that we validate that work. We say that it is worthwhile because here are these people who are alive today because of the donation process. It very much is complementary to the work of DonateLife. Transplant Australia does receive funding from the federal government through the Organ and Tissue Authority to help resource the staging of the Australian Transplant Games, but the funding does not cover what is required to then do it at a local level.

For example, in Newcastle in New South Wales in September of next year we have received a funding agreement with the New South Wales government to stage the games and that is in the order of $325,000 to enable us to put those games on successfully there. The Organ and Tissue Authority helps fund the underlying foundations of our work and then a state government comes in and says, 'Yes, we'll help you put the event on in the local area.' The New Zealand government is very much interested in staging the games in Rotorua in 2014, and New Zealand's rate of donation is significantly worse than that of Australia's. They understand the importance of such a program. We work in a complementary fashion to the Organ and Tissue Authority and to the DonateLife agencies in each state. We are a DonateLife partner. We have signed on to a communications charter to try and give consistent messaging to the public around family discussion and around the need for people to know the wishes of each other in terms of organ and tissue donation. That said we are still an independent NGO and we are very proud to represent the views of our members and we would take a different approach to presume the consent, for example, to say what the Organ and Tissue Authority or at least the federal government in its policy-making would have.

Ms CROZIER—Thank you.

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Mrs PETROVICH—My question leads on a little bit from Georgie's. It is about communication. You raised a sensitive issue of the reality that donations come from the deceased in many cases. From personal experience my aunt was a double lung recipient and had an extra eight years out of that. She was also Catholic, and I know she was very grateful for her donation but initially she had some thoughts about some of the ethical things associated with that. What religious or cultural barriers do you experience and can they be overcome through education or further dialogue? You have touched on the social marketing aspect of what you do. Are there other ways we can approach this?

Mr THOMAS—It is a very good question. We need to go back to one of our frustrations. Traditionally, if I turn to the committee members and said, 'If you believed in organ and tissue donation, what can you do about it to support it?' Invariably people would say, 'Tick your driver's licence.' That only exists in New South Wales. We introduced the Australian Organ Donor Register in 2005-06, around the same time as the David Hookes Foundation was doing a lot of work following his death, and the fact that Robyn donated David's organs and tissue. We are frustrated that we have never quite properly explained to the Australian public that, 'Look, it's no longer the driver's licence system, it's now the Australian Organ Donor Register.'

To make matters even more complicated from the public's point of view we have then moved to, 'Really, the most important thing is to have family discussion.' The answer is that they are all very important but we would welcome a very clear cut communications campaign to the general public which talked about the fact that the Australian Organ Donor Register still exists and is important. There has been a tendency to de-emphasise that in favour of family discussion. It is an interesting question about whether or not, if there was no register, would Transplant Australia support the establishment of a register. We are coming to the conclusion that registers can sometimes get in the way. In New South Wales, for example, where the driver's licence system still exists—and thank goodness it has been disposed of in Victoria—30 per cent of people who have ticked the box on the driver's licence have ticked it as a 'no'. What we fear is they default to a 'no' position because they have never thought about it, they are at the motor registry, and the person on the other side of the counter says, 'By the way, you haven't looked at this.' Without education, without information, they go, 'Whoa'. That becomes a legal document and they cannot be pursued for donation.

In an ideal scenario you would have a family discussion, but the reality is that we have 5,000,000 people in excess who are on the organ donor register in one form or another out of a potential pool of 17½ million people when you exclude children in Australia. Almost one in three have done something about it, and that does need to be supported. Then you come down to the more specific issues around cultural barriers and some of the religious barriers that exist. Overall, people do not think about their death. I did not wake up this morning and think about my own mortality. Hopefully no-one here did. I think apathy is probably the biggest problem we face. We do know, however, that there are a lot of misconceptions in terms of various religious groups. We participated in an ethics forum last week where there were leaders from Buddhist, Muslim, Catholic, Islamic and Jewish backgrounds, and all of the religious leaders say, 'We do support organ and tissue donation.'

I have a Roman Catholic background. To me organ and tissue donation is a wonderful gift that you could give someone. With people of a Jewish background—having spoken with the chief rabbi in Sydney—it is more of an obligation, you should do it. Whereas people with a Catholic background might see it as more of a gesture. There are slightly different interpretations that various religions have. The followers of those religions have different interpretations yet again. I would not profess to be an expert in the Koran but you would do well to look at the Koran and the various statements that are listed in that which can be interpreted in different ways, depending on your fundamental beliefs and your commitment to the Koran. But overall the message is, 'Yes, organ and tissue donation should be supported.' Often there is talk about that you need to bury the body as quickly as possible. If we go back to that hospital corridor situation, if someone is clinically brain dead should the ventilator be turned off as quickly as possible to enable that burial to take place.

There is lots of misinformation, lots of different interpretations, and an education campaign to various religious groups would do well to help dispel some of those myths and misconceptions. There are other areas that do need addressing. 'Will I really be dead?' is probably the one question that many people ask. 'Do we have confidence in our health care system?' Many indigenous people do not even have confidence in going to a hospital, let alone the doctors in the hospital. They do not understand the process, they do not understand

25 August 2011 Standing Committee on Legal and Social Issues - Reference Committee 26 what the hospital is there for. Organ and tissue donation is a significant for indigenous people, but we know all Australians, regardless of their background—whether or not it is Anglo-Saxon, indigenous, from other ethnic groups—are very quick to put their hand up when they need a transplant. If it was your daughter or if it was your son, they are very quick to say, 'Yes, please.' But as a community group they can be very reluctant to participate in even considering it or discussing it.

Transplant Australia, our most active branch, our most active committee—thanks to people like Kevin—is in Victoria. We have people of all backgrounds and denominations who are transplant recipients, out there and enjoying life. Getting them educated and in a position where they can go out to their own communities and be disciples would be a wonderful new way to demonstrate that organ and tissue donation works.

The CHAIR—Thank you very much to Chris and Kevin. Thank you for giving us your time today. As I said earlier, you will get a transcript of the hearing today in the next few days. If you wish to make any corrections or additions there will be a time period set out in that that you will be able to do so. Again thank you very much for your time today.

Mr THOMAS—The one question that your committee member asked, I will bring back some further information for Richard to answer that.

The CHAIR—Thank you. We will adjourn for lunch and reconvene at 1.30.

Witnesses withdrew.

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