Financial Assistance for Live Organ Donors Bill

It is a pleasure to take a call tonight in support of my colleague Chris Bishop’s Financial Assistance for Live Organ Donors Bill. I think this is a special opportunity to acknowledge those who have already given organ donations, both the living and those who have, unfortunately, passed away through circumstances beyond their control.

There are two types of organ donations. There are the live donors, and the ones who have had brain injuries, which often result from head injuries or strokes. A lot of those injuries, actually, have happened as a result of car accidents. My information tells me that between 88 and 150 of about 30,000 deaths in New Zealand are actually in circumstances that allow for organ donation. It is also a credit to society, given that there are now so many more cars and that the population is so much bigger, that the number of car accidents in the last 15 to 20 years has dropped. It is making those deaths fewer, which is a good thing. That is actually making fewer organs available for donation from that source, and long may that continue.

It is also noted that there is large public support for this. In a recent Colmar Brunton poll 67 percent of people agreed to there being compensation similar to something that is based on ACC.

So organ donation rates in New Zealand are improving but they are not improving fast enough, and, as the member Kevin Hague alluded to before, the need for organ donation is growing, particularly around diseases like diabetes. Although I acknowledge that nobody in New Zealand would want to be doing this for money, certainly the money will help, because there are a lot of people who would love to do this for family members and simply cannot afford to take the time off work or take the time away from other needs of their families to be able to do this.

I know the effort that it takes for some people, because I have got a friend at the moment who is going through quite a programme. It is involving her own health, her own weight, and everything about her, so that she can actually be in a fit state to give her kidney to her husband, who is dearly in need of a kidney transplant at some point in time. So I know that people make that effort out of great love, and I know there are other people who would continue to make that effort out of great love for the person whom they want to donate for. It is just unfortunate that some people cannot put themselves in that position.

In Budget 2014 there was $4 million allocated over 4 years to set up the National Renal Transplantation Service. It covers donor liaison coordinators and a continuation of the New Zealand kidney exchange programme, which is great. That follows up from money that was in the Budget in 2012, which was to raise awareness and encourage more people to donate. Despite being set up to help with kidney donations and awareness—and people know about it—actually, there are not so many people coming forward, and I believe that this bill will help to change some of those circumstances.

Also, although people do not do this for money, the chief executive of the Ministry of Social Development, under what is proposed in this bill, will need to be satisfied that the applicant has given their free and informed consent to become a live donor. That is very, very important.

I look forward to this bill coming to the Health Committee. The select committee members work very well together and, despite there being the small glitch that the member Kevin Hague alluded to before, I believe that this bill is going to come out in a good space, and that it will encourage more people to come forward and save the lives of a few people.

I guess tonight we have had quite an afternoon and quite an evening in the House talking about rugby. One of our greatest rugby stars, Jonah Lomu, has been one of those people who has gone through that process quite openly and quite publicly. I think that is something that we are all very, very grateful for, and I would imagine that there are a lot of people in this House who have also been touched by family members and people going through this. Although it is increasing—

Order! The member’s time has expired.

First, I would like to congratulate Chris Bishop on having his bill drawn from the ballot. It is purely luck, but it is a good feeling when one’s bill is drawn. On behalf of New Zealand First, I am pleased to rise in support of the Financial Assistance for Live Organ Donors Bill. Organ donation is a selfless issue, and it is to be commended.

I had a look at the Kidney Health New Zealand statistics and found out that in New Zealand approximately 200,000 people have been diagnosed with chronic kidney disease. Of these, about 2,600 are currently on dialysis, and, of that 2,600, there is a waiting list of about 700 for a kidney transplant. Unfortunately, New Zealand has got one of the worst live donation rates in the world. Last year there were fewer than 150 kidney transplants performed in New Zealand.

The number of live kidney donations has always been relatively low. It has been at about the same low level for the last 5 years, and this bill is basically introducing a much-needed change that, hopefully, will raise that number significantly. New Zealanders currently have to decide whether or not they are going to save the life of a fellow Kiwi—often a family member—or continue to support their family financially. The current rate available to donors for any lost income is capped at $355 per week. That is not enough to cover a mortgage. It is not even enough to really cover the living costs of a family. So it is understandable that people find it very difficult to decide whether or not they are going to lose their income for the 8 weeks of recovery time following a kidney donation.

What makes the lack of compensation offered by the system all the more surprising is that the cost of caring for a person on dialysis is tremendous. The latest figures put the cost of looking after someone on dialysis at $60,000 a year, and this is an overall cost of about $150 million every year for those who are currently on dialysis. That is about three times the expense of transplantation, on a per-patient per-year basis. Any increased cost to the taxpayer through this bill’s offer of compensation is going to be saved more than tenfold in reductions in health costs.

New Zealand First believes that we do not have to go down the path of organ donation becoming an option by which people believe they can actually make a profit—they sell their organs for money. We believe that donating should always be in the domain of altruistic motivation, not financial motivation. So we support the bill’s compensation rate—80 percent of previously earned income.

We do have some questions. Kevin Hague alluded to one of them, and we are looking forward to working on it in the select committee. We would like to acknowledge the Hon Michael Woodhouse for the bill, because we know that this member’s bill has been altered. It has been around since 2010 and it was originally sponsored by that Minister. The bill does have cross-party support. It is financially responsible, so we wonder why it has languished in the ballot for so long. Obviously, we could have done, as a Parliament, more about this issue earlier. Having raised that point, I would say that New Zealand First is very pleased to support the bill. We look forward to working on it and we are looking forward to some great outcomes. Thank you.

It is my great privilege to speak on the Financial Assistance for Live Organ Donors Bill. I want to acknowledge my friend and colleague Chris Bishop for his great good fortune in having the bill drawn out of the ballot, when I had failed after a couple of years and when successive colleagues were also not so lucky.

I just want to go through a little bit of the genesis of the bill. The bill came about for two reasons. One was that my very good friend whom I have had a relationship with since I was 5 years old has had two kidney transplants. He has a family who are familiar with the condition of renal problems. The first transplant was of a cadaver donation following a motor vehicle accident and, some 5 years later, his very generous brother donated one kidney for the second transplant, and he has enjoyed very, very good health since then. So I spent much of my adult life watching my good friend go through quite a few health challenges—home hemodialysis—and literally hundreds of hours hooked up to a machine in order to keep him as well as he could be.

But that actually was not the genesis of the bill. It was a conversation I had with the parent of another good friend, who himself had had a kidney transplant. That parent said to me that if I wanted a member’s bill, this was the one to go for because there is a significant financial barrier to altruistic donation by live organ donors. That commenced a journey of investigation and inquiry and relationships with the Kidney Foundation and other stakeholder and advocacy groups, which certainly confirmed that there was a barrier. We know all about our relatively low rate of organ donations in this country, and I do not think that this bill, in and of itself, is going to make a significant dent in that, but I think it does remove one barrier.

I want to acknowledge the comments of the previous speaker, Barbara Stewart, about the very important notion that this measure should not be an incentive to encourage otherwise ambivalent donors to get over the line and make that decision. That decision must have been made, and our medical fraternity should be diligent in ensuring that that is the case, so that this is not an incentive but a means of acknowledging that there are significant financial costs to altruistic live organ donation, and that these costs can be met using the formula used for the provision of weekly compensation through ACC.

I have every confidence that the Health Committee, under Mr Simon O’Connor, and the sponsor of the bill, Mr Bishop, will do an excellent job of ensuring that any wrinkles can be ironed out. I look forward to its return from the committee and I commend it to the House.

I rise to take a relatively short call on this bill. It is one that we support, and for good reason. I commend and acknowledge Chris Bishop for shepherding this bill through the House.

I want to just clarify a point that Mrs Kuriger made regarding deceased organ donation, around the number of car accidents that we have in this country. In fact, what has occurred over time is that the safety of our vehicles has got to the point that we are unable to harvest—for want of a better word—organs, because our safety has protected people so well that when they have a car accident that is really, really bad, the organs from those people are unable to be used. So rather than there being fewer accidents, it is actually around the condition in which the organs from a deceased person are able to be retained. That is an interesting point that I know very well because I too, like the previous speaker, the Hon Michael Woodhouse, had a very dear friend, Kathleen Mary Jacob, who was on the waiting list for a kidney but, unfortunately, did not find a donor in that time. I think there are many stories that will transpire across the House during the passage of this bill about just that point.

I do want to say that there is a very good reason for supporting the increase in financial support, to similar to the level of ACC, for the very point that it is very difficult for us to find live donors and we should be supporting them well. In the case of my own dear friend, it would have made a significant difference. She had someone lined up, but they were unable to take off a significant amount of time from work.

I am not going to deal with this any further now. It is a great bill, we support it, and I look forward to its passage through the House. Thank you.

It gives me a lot of pleasure to rise in support of this Financial Assistance for Live Organ Donors Bill at its first reading. I too congratulate Chris Bishop on having this bill drawn from the ballot, and from here it will go to the Health Committee.

I am pleased but not surprised to see that this bill is enjoying support throughout the House. It is a non-political issue. It is an issue of humanity and providing support to people who are in a position, and willing, to take part in a live donor procedure for someone they may know or someone they may not know, for no personal gain to themselves. I know that the Health Committee, and it is very fortunate that the sponsor of the bill, Chris Bishop, also—no, that is the justice bill; I take that back. The Health Committee is also a collegial committee—there are several collegial committees in this Parliament—and we will give the bill due consideration.

I imagine that the promoter is quite keen to get on with the voting, but there are just one or two other things I do want to note around this live organ donation matter. It is that somebody with a chronic illness who has their life affected by their chronic illness—it can affect not just themselves but also their families, whether or not they can work any more. So the prospect of being able to have some assistance by way of a donation has the potential to significantly improve the quality of life of those people and, indeed, their long-term survival rates. That matter alone, I suspect, is why this bill is enjoying such good support through the House.

It is, interestingly, a member’s bill that has financial considerations and, in a way, it is unusual to have that in a member’s bill. So, again, that will be one of the considerations that the Health Committee will take to the consideration of this Bill. I commend the bill to the House.

Tēnā koe, Mr Assistant Speaker. I am pleased to take a short call on the Financial Assistance for Live Organ Donors Bill. As Kevin Hague has noted, the Green Party will be supporting this bill. It is a sensible bill. It makes for a fairer health system, and it is overdue. I thank Michael Woodhouse for explaining the genesis of the bill, but it is a pity that in the 6 years since he developed it the Government has not taken it over and introduced legislation in the meantime.

The current situation is quite ridiculous. When people do something incredibly altruistic and donate an organ to a friend, a family member, or someone whom they do not know and then they spend 6 to 8 weeks recovering from that surgery, unable to work, they are eligible for or entitled to receive only the lesser of the weekly rate of the sickness benefit or the equivalent of the weekly after-tax income. When the sickness benefit is $149 to $350 a week, that is hardly any compensation for the loss of their earnings. This is penalising people who make that altruistic decision. So the bill is very welcome in removing that obstacle to people contributing an organ to enable somebody else to have both a much better quality of life and, potentially, also a much extended life. The bill, by moving it to being the greater of the sickness benefit or 80 percent of their pre-operation earnings as calculated under ACC, is entirely reasonable.

It may definitely help to increase the number of organ donors. As Kidney Health New Zealand has noted, there is an increasing gap between the number of people on waiting lists for an organ transplant and the number of transplants that can actually be performed. We have got 700 people on the waiting list for a kidney transplant, but fewer than 150 transplants were performed last year. The bill, in removing that financial penalty of loss of income, is removing an obstacle to donations.

The bill is also being supported by the Green Party because when it costs $60,000 annually to maintain someone on dialysis, there are likely to be significant savings over the longer term. But the best thing is the quality of life and the extension of life that such generous and altruistic donations provide. This bill is very welcome. Thank you.

Can I start my speech in reply by thanking members around the House for their kind remarks, both tonight and also 2 weeks ago when we started the first reading of this bill. It is good to see that the bill will have unanimous support, certainly at its first reading, to go to the Health Committee for further consideration. A particular thankyou goes to Barbara Kuriger for her kind remarks. I also, at the start of my speech, want to acknowledge my friend and colleague Michael Woodhouse. It is good to see you in the House, Minister, and I thank you for your comments and for explaining the genesis of this bill.

The Minister’s comments about why he was motivated to introduce the bill—or tried to introduce the bill back in 2010—are very similar to my reasons for taking the bill on from Mr Woodhouse. I do not have perhaps quite the personal connection that Michael has, but certainly I have been moved by the appeals and the calls that have been made to me from people in the Hutt Valley about the hardship that they have undergone after donating organs. I am thinking right now of a kidney case in particular. Those experiences have motivated me to pick up the bill from Cam Calder, who had it temporarily after he took it over from Michael. I have taken over your bill. I seem to be taking your staff at the moment, as well—

💬 Hon Michael Woodhouse: You can take my portfolios.

Health and safety—you can have health and safety.

I want to, in reply, just deal with a couple of the issues that were raised by members. Firstly, there is the issue of where the bill should go, and whether or not it is appropriately placed in the Health Committee or in the Social Services Committee. Let me just say quickly that I think it is a sort of finely balanced debate. The argument about sending it to the Social Services Committee is that ultimately the money is paid out through the Ministry of Social Development, and so it should go there, but I take the view that ultimately we are actually dealing with a health issue here, fundamentally. The other point that I would make is that a lot of people and some members—and members may have seen this in the media—do have issues with the way in which the Ministry of Social Development deals with this. I think it is worthy of a wider discussion about where the money comes from and how it is distributed, and I think the Health Committee is the right place to do that.

Secondly—just dealing with the issue about the Attorney-General’s report under section 7 of the New Zealand Bill of Rights Act—members will be aware that the Attorney-General is required by the New Zealand Bill of Rights Act to provide a report to the House for the first reading of a bill if it is unjustifiably inconsistent with the New Zealand Bill of Rights Act 1990, in his opinion. In the case of this bill, the Attorney-General has provided such a report. The reasoning for that, having read the report, is really a technical issue—I would say a drafting issue—about the treatment of beneficiaries who also work and their treatment vis-à-vis other beneficiaries who do not work, and vis-à-vis the treatment of ordinary working people. The argument made by the Attorney-General is that there is discrimination against beneficiaries who receive welfare support but who also work, and that there is differential treatment on the grounds of their work status, which is a prohibited ground of discrimination under the Human Rights Act, which has been imported into section 19, I think it is, of the New Zealand Bill of Rights Act 1990.

That is a fair enough point of view, and it is actually one of the strengths of our New Zealand Bill of Rights Act system that an issue like that can be advertised to the House’s attention so that it can be considered during the select committee process, so that we can have a conversation and ventilate those issues, both in the first reading but also in the select committee, and try to—if we can, as much as possible—iron out some of those issues and make the bill as rights-consistent as possible. As Kevin Hague rightly said, I am looking forward to the Health Committee considering and deliberating that issue, and I am hopeful that we can work out a way through, so that it is not inconsistent with the New Zealand Bill of Rights Act when the bill comes back to Parliament.

Thirdly, on the issue of organ donation rates that was raised by Kevin Hague, he said that as far as he is concerned we have, essentially, increased our organ donation rates from deceased donors about as much as we can. Again, that is something that I think that the Health Committee will have a look at. I am not sure that that is necessarily the case, but what he is right about is saying that we do need to increase the donation rates from living donors. Our organ donation rates are about half that of Australia’s and about a quarter that of Spain’s. As I said in the bill’s first reading, this bill is not a panacea for some of those issues. It is not a silver bullet—

Order! The member’s time has expired.

Bill read a first time.

Bill referred to the Health Committee.