Compensation for Live Organ Donors Bill

It is a great privilege to be here tonight speaking in the Committee stage of this very important bill, and I want to thank all parties in Parliament for their support of this bill so far. The bill has had a title change; it is now called the Compensation for Live Organ Donors Bill. It changed from the Financial Assistance for Live Organ Donors Bill, and that reflects the fact that the Health Committee considered that compensation for lost earnings was a better reflection of the bill’s purpose.

In my introductory remarks for this debate that we are going to have tonight, I wanted to just outline for the Committee the purpose of the bill again. The purpose of the bill, really, is to—I suppose you would say that the overriding purpose of the bill is to reduce the financial barriers for live organ donation, and the corollary purpose to that is to better compensate those who altruistically decide to sacrifice, literally, a part of their own body to help other people. We need to recognise, I think, that people who are live organ donors are heroes—they truly are heroes in our society. They selflessly sacrifice a part of their body to try to create a better life for somebody else.

In fact, we heard at the Health Committee, which I was very privileged to sit on—and I want to pay tribute to my friend and colleague Scott Simpson for swapping with me on the Finance and Expenditure Committee to allow me to come in and hear some of these stories. We heard stories from people who have donated organs—typically kidneys, but also other organs that are available for donation—about the hardship that they had to endure when they made that sacrifice, when they did decide to try to help out a friend, a family member, or a loved one. Actually, there are people out there in society who choose to donate to people they have never even met. Truly, what a heroic thing to do to donate a kidney, typically, to somebody else whom you do not even know because you want to contribute to society and try, through the bonds of friendship and love, to create a better place.

What we know is that the financial barriers to people when they are considering whether or not they donate are considerable. The status quo at the moment is that people receive the equivalent of what we used to call the sickness benefit. I would not say it is a paltry sum of money, but it would certainly be a large sacrifice for many people when they do choose to donate. Typically, people take anywhere between 6 to 12 weeks off work. For people who are earning money, for people who are on any sort of moderate income, to have to take time off work and sacrifice that sort of salary is just not a starter for most people. Indeed, we heard lots of people who came before the select committee and said exactly that.

What this bill does is it increases that support to 100 percent of earnings that were forgone. So it is compensation at that 100 percent rate. The bill as originally introduced, as we know, set that level of compensation at 80 percent, which was in line with ACC. At the second reading, I think, we canvassed in the House why the analogy with ACC is actually inappropriate, and the biggest reason for that is, of course, that people who decide to sacrifice a part of their body, the people who decide to donate an organ, are not enduring an accident as we would typically think of it in terms of the accident compensation legislation. We do not need to create that gap between what you are earning on ACC and what you are earning at work because these people are going to go back into the workforce once they have recuperated from that operation. So the analogy with ACC is inappropriate.

Instead, what we decided to do at select committee was make that rate 100 percent of earnings forgone. This brings New Zealand into line with what they have in the United Kingdom, which is 100 percent earnings compensation, and will essentially adopt the principle of cost neutrality. In other words, you should be no better or worse off from having donated. What that means is that, essentially, it gets rid of that financial barrier that may exist. We have to be very careful in walking a fine line between disincentivising people by placing a financial barrier and the commercialisation of organ donation or the potential commercialisation of people’s body parts. So I think the 100 percent compensation is the appropriate balance. It does not over-incentivise people; it just gets rid of that financial barrier. That is the major purpose of the bill, and I am looking forward to the conversation tonight.

Labour supports this bill, the Compensation for Live Organ Donors Bill. You have heard of that old saying “pass the parcel”, I am sure. Well, this is one of these bills that you would call “pass the bill”. I do not mean the passage of the bill. I mean that this is a bill that has gone through the hands of a number of members: Cam Calder, Michael Woodhouse, and, finally, Chris Bishop. There is an old joke that is often told at celebrity debates, and I am sure Mr Bishop has heard it. It goes like this: “He was so lazy he married somebody who was already pregnant.” In the case of Mr Bishop, he took over a bill where the work had already been done, then sent it to the Health Committee for further work to be done while he sat taking the credit for it. I can see an analogy between that joke and Mr Bishop. The truth is that this bill came to the select committee in a very poor state, Mr Bishop—

💬 Chris Bishop: Here we go.

Yes, I am going to say this, because I want to rename this bill. I want to rename it the “Health Select Committee’s Bill”—not in the name of Mr Bishop, but in the name of the Health Committee. This is because the bill was not in a fit state when it came to the select committee. Mr Bishop had just put his name and the glory on it—and it was out there in the media—but he had not done the grunt work on this bill. So it came to us at the select committee and we set out to turn it into something that was going to be workable, and I believe that the changes that we have made do make it workable.

We started off by changing the name. We changed the name so it does reflect that it is about financial assistance for live organ donation. So we changed the name, and we added a new purpose clause—and that is usually what the bill is all about, so we added a new purpose clause. We rewrote substantive portions of this bill, and then we worked out how you could actually give some financial compensation to people. What we put into the bill was 100 percent compensation of income to donors for up to 12 weeks during recovery. We even included beneficiaries, so they are excused from a work test and related obligations. So I just wanted to get that on record. It is all very well having a bill and getting the glory, but be thankful, Mr Bishop, that you had a Health Committee that was prepared to turn it into something that is for the benefit of New Zealand—and it needed to be, because by international standards we have very low rates of both live and deceased organ donation.

I want to, at this point, pay a tribute to Andy Tookey. I have known him for a long time. He is a long-time campaigner for organ donation. I think I first met him in the early 2000s and he said that the system is a mess. So why is it a mess? It is because in New Zealand we have not had good levels of donation either from live donors or from those who are deceased. We looked at the issue of deceased donors at the select committee, and I think it is worth mentioning why Andy Tookey believes that there are such low rates of organ donation at death.

At that time there was—I think he brought it up—a story on Stuff in March 2016 about a young man called Michael Boyes who died suddenly in February. His family honoured his last wish by donating his organs. Seven strangers were helped by that donation, but the point was made that it does not happen in many, many cases. In fact, when you look at what happens for those who have deceased and the donation of their organs, most family members refuse to allow their family member’s organs to be donated. When they are asked, six out of 10 refuse. You could say—and I think it is true—that it is the worst possible time for a family to be asked. So it is understandable that often families will overrule the dying wish of that family member.

Interestingly, an online survey that was undertaken showed that 88 percent of New Zealanders believed that the wishes of a person should be followed through even when they have died, but that does not happen. I think it is probably because we would have to change the law, because once a person has died they are no longer viewed to be a person, and the family takes control of the body. They then have the say over whether a person’s organs can be donated. We could not address this issue in the select committee because it does require I think, as I said, a change of law, and it is probably going to need something like a proper register, not just a driver’s licence that says you are willing to give your organs. So in that area there is still work to done and I think I will return to that a little later on.

But in terms of this bill, I think what is important is that we changed it so that it is now fiscally neutral for a person. It is no incentive for someone to go and give an organ and be paid for it. That is immoral and we would certainly not support that. Just as we do not support people being paid to give blood in New Zealand, we certainly do not pay for people to give organs in this country. But what this bill does—and we looked at it so carefully to make sure that we got it right—is that it does allow for 100 percent compensation of income for those donors. Financial barriers are a problem. People have to give up their work, be off sick, and it can take up to 12 weeks before they can return to work, which can be a big financial turnoff for anybody who might have been willing, say, to donate a kidney to a family member. So I think removing that financial barrier is what this bill is really all about.

As it was introduced, the Attorney-General said it was inconsistent with section 19(1) of the New Zealand Bill of Rights Act and that was because there was unjustified discrimination against beneficiaries. We fixed that problem as well so that they could be excused from a work test—as you know, that is a requirement—and other related obligations. So I think what we have done with this bill is to make it—well, certainly far better than when it was introduced, but something that I hope will increase the number of live organ donors.

But I just wanted to raise this issue: the Minister said that what we need to do in New Zealand is to change the culture to lift organ donation. Yes, we do need to change the culture. He said we do not need a register; I disagree. I think if you are going to collect organs from live and deceased donors, you do need to have a register. Putting that to one side, if we are then going to change the culture, you would have thought that the Minister would put some funding behind the organisations that are out there to change the culture. Can I tell you that there has been no increase in funding to donor liaison coordinators—none at all, it has stayed the same—since the 2014, 2015, and 2016 Budgets. There has been no additional funding for Organ Donation New Zealand since 2012—and we have got funding from only five Budgets. Every year the money has been the same. So you have to say that there has not been a real interest in changing the culture and working with those organisations and people who could lift the information and knowledge to work with our surgeons in intensive care. The intensivists are there. They are there with patients who are dying; they could be working with families if they had greater information. I was really disappointed to get this answer in a written question and to see lots of fancy talk from the Minister about the culture change needed to lift organ donation, and very little contribution has been made towards that.

Can I start by saying, on this evening, what a great day it is to be a monarchist—when you have an apolitical head of State and you do not have to go through what republics are. I just want to put that on record.

Mr Chair, I want to acknowledge the member sitting in the chair beside you, Chris Bishop, for the work that he has done. I think it has been rightly pointed out that he is working and has worked with a number of people to bring this bill to the House and now into the Committee stage. Chris Bishop has worked very hard and cooperatively with the select committee to take the bill from how it was packaged to us originally to the package that we see now, and as a sign that he continues to work, there is a Supplementary Order Paper in his name on the Table, and I might get to that a little bit later.

There is undoubtable need for this legislation, and I am in agreement, actually, with what the former speaker, Annette King, just said. There is a lot more to be done, and we can touch on that where necessary as well. But in this Committee stage we are here to look at the particular parts of this bill and where we as a select committee have got to. I just want in this first contribution to really keep my focus on Part 1—I know all parts are being debated together—and, as people who are looking through the bill will see, Part 1 is a substantial rewrite.

In terms of trying to understand why the rewrite happened, there have actually been a number of changes that have occurred. In clause 4—something as simple as the definition or interpretation area—you already see why the member and the committee had to make changes: we had to make allowances for the health practitioners Act. In fact, we have only just made changes around that recently in this House, so I think it is really important to give the context that the changes have happened partly as the discussions in the committee occurred, but partly as well when trying to adapt to the ever-changing health situation that we are in. We have also sought, in the deliberations that we have had, to align this piece of legislation—

The CHAIRPERSON (Lindsay Tisch): I am sorry to interrupt the honourable member. The time has come for me to leave the Chair for the dinner break. This debate is interrupted, and I shall resume the Chair at 7.30 p.m.

Sitting suspended from 6 p.m. to 7.30 p.m.

The CHAIRPERSON (Hon Chester Borrows): Kia ora mai tātou, tēnā tātou katoa. My mihi this evening: e kore ā muri e hokia [what is done is done].

Members, the House in Committee on the Compensation for Live Organ Donors Bill is resumed. Members, before the dinner break, we were considering all provisions in one debate. Simon O’Connor had the call, and he has less than 2 minutes and 46 seconds remaining.

Thank you, Mr Chair—2 minutes and 46 seconds of his first call and we will see whether he gets the second! Serendipitously, I have just actually come from a function with the Lung Foundation. I have been talking to some of the medical staff, who were telling me about some colleagues who, at this very moment, are actually doing a lung transplant. I think that is actually quite, well, as I say, serendipitous to this topic. What is happening there is just a small example of what this bill in the name of Chris Bishop is trying not only to support in that particular instance moving forward but also in terms of trying to see an increase. Ultimately, behind this bill is the desire to see more donation in New Zealand—in the first instance, live donation, but as I have referenced many times before, wider donations than that.

At the break, I was just indicating first and foremost, looking at Part 1, one of the reasons why there have been some substantial changes to this bill. The first that I had touched on was actually that the legislation in and around health is changing. I use the example of the Health Practitioners (Replacement of Statutory Reference to Medical Practitioners) Bill, which is now an Act, that has been before the House. We have been trying to integrate that, and you can see that in clause 4.

In respect of clause 5, I was just noting that, actually, it has been really important for the committee that we did not wish to recreate the wheel. So you will see in the likes of clause 5 in Part 1 that we have tied the notion of earnings to what is in the Accident Compensation Act of 2001. If I get an opportunity later to take a call, I will actually expand on how we have dealt with the whole ACC question, because for those who have been listening to earlier debates, it was one of the little conundrums that we faced in the committee of how we provide entitlement to people who are on ACC, but, in giving them entitlement through this bill, make sure that they do not subsequently lose their ACC entitlement. That is in later parts. So it has been important, particularly in Part 1, to link things back to existing Acts and to keep it relatively simple.

We then move into the area of Part 2. This is primarily around earnings, and members will know that when we started this process it was a remuneration of about 80 percent. But it did not take long, with not only the encouragement of the member but through the work of the select committee, before we thought we would move to something like 100 percent. So that has been a really good step, particularly on the basis of cost neutrality. We have taken that from other countries and introduced it here—that this is not just simply about 80 percent recompense but we can actually go to 100 percent. In fact, there are further elements, and I think they are in Part 2, that also allow for elements around travel and so forth.

So we have taken a long time as a committee to delve through that. As people might anticipate, there are a number of complexities in this. As other people have noted, as has the member in the chair himself, what was an initially good suggestion has brought about a whole range of changes, and quite rightly so. So what we are doing here is 100 percent. We have made sure that there are transitional arrangements, in particular, around this. I want to tease both those elements out. So, as I said, 100 percent recompense—that is really important. The transitional side is that we want to be very careful in how we have drafted this, to make sure that no one is going to hold off the altruistic action of donating an organ. So transitional arrangements have been discussed in the committee and added into this bill.

I will not go, at this point, through all the complexities of that. We did look around at who should be donating. We have discussed this, and you will see articulated in clause 9 of Part 2 provisions around who qualifies for a donation. Again, I suppose it is just trying to draw to the attention of the Committee that it is very easy for us to talk about the good that is live organ donation, but from that simple concept comes a whole complexity.

One element we have looked at is, obviously, those from overseas, and we have dealt with that, and we have also looked at income thresholds. Again, there was a lot of debate in the committee, but it was a collegial one, and we said that, actually, it is going to be 100 percent of whatever a person’s income is. So granted you could be earning millions and millions of dollars, and in theory we will reimburse that. First and foremost, if this is the altruistic action that you are taking, then you should not be at any loss. Again, we see that neutrality principle that we have brought into the bill. The other issue, of course, is that there is a relatively low likelihood; it is almost scandalous—and I had to use that word—how low the rates are. We are not trying to trade off that, but it is a recognition that it is regardless of your income. We believe, and I am hoping as the House continues to support this, that you should have that earning remunerated fully.

We are also making sure that that earning is up for 12 weeks. Those following the bill will see that is in clause 10. There is some discretion—that is in subclause (2) of clause 10. I draw attention to that specifically, of course. I think it is important to know that it is not just hard and fast; I think we appreciate in the Health Committee—and I am sure everyone here does as well—that not everyone is the same. That element of discretion rolls right through this bill in a number of clauses. In order to wrap up, because I can see other colleagues are keen to take a call, discretion is being operated by the Ministry of Social Development (MSD), and depending on whether I get the opportunity to take further calls, we have made the decision in this bill to put this under—sorry, it is the Ministry of Health; I apologise, it has gone to the Ministry of Health, not the MSD. We have taken it from MSD and put it into the Ministry of Health, and, again, there is a high degree of discretion to the Director-General of Health in this space. So I am just going to leave my initial thoughts there, and I am looking forward to other contributions from the Committee.

I rise on behalf of New Zealand First and my colleague Barbara Stewart tonight to talk about, in the Committee of the whole House, the Financial Assistance for Live Organ Donors Bill. This is a good bill, but New Zealand First feels that this bill should have come to the House a lot sooner than it has, although we do understand the passage and journey that it has taken in terms of the time of 12 months that the bill spent with the Health Committee to make sure that it was able to have significant changes made to it and that when it got to the House it was a bill that represented everything that a member’s bill should represent and everything that it should do; that is, to enhance and remove barriers for the betterment, to make a difference no matter how big or how small to the lives of New Zealanders.

New Zealand First supports the recommendations from the Health Committee to change the title of this bill from the Financial Assistance for Live Organ Donors Bill to the Compensation for Live Organ Donors Bill. This is justified because it provides donors with the appropriate compensation for lost income for doing such a selfless act that will have a significant impact on their lives, not only for the organ recipient but also for the donor themselves. This is a life-changing decision, and we believe that this bill—and the title will reflect this fact—is not merely financial assistance but it actually recognises the significance of the importance of this bill. New Zealand First believes that it is vital that live donors should never be financially disadvantaged or financially advantaged from donating organs.

The concerns raised by the Attorney-General with regard to the New Zealand Bill of Rights Act have been taken on board by the select committee, which has accepted that there are beneficiaries who may receive income and be entitled to compensation, or people who may work part-time and receive New Zealand Superannuation or even our veterans pension.

New Zealand First supports the cost neutrality for donors by increasing the original compensation rate from 80 percent to 100 percent of lost income. New Zealand First does recognise that there are additional issues that do come about pre - organ donations and post too. We realise that the recovery rate for some people takes longer than it does for other people, as well.

New clause 4 does provide a definition of what are qualifying organs. This is good to see. We in New Zealand First think that it is important to define that not only is the donor a person who donates to a person funded by the public health service here in New Zealand but also the definition further sets out a “qualifying organ” as the “whole or a part of any of the following types of human organ: (a) kidney: (b) liver: (c) any other type of human organ declared by regulations to be a qualifying organ.”

I just want to touch briefly on new clause 29, “Regulations”. This will provide: “(1) The Governor-General may, by Order in Council made on the recommendation of the Minister of Health, make regulations declaring a type of human organ to be a qualifying organ …” This is actually really good, because this bill has also been futureproofed for donor transplants that are currently carried out in other countries, but not here in New Zealand. These include the small bowel, the pancreas, and lobular lung transplants. We are also pleased to see the Health Committee has allowed for new entitlements to be backdated for eligible donors to the date this bill receives the Royal assent. This further takes away the deterrent to people who want to donate but hold back from donating an organ.

In summary, New Zealand First supports the member Chris Bishop’s bill. This will not, however, deal with the issue of the low organ donor rates here in New Zealand, but it will enable people who need help to get the help that they do need to get. These are members of our communities, our families, and our friends. This bill, as I said earlier, is what members’ bills should represent. It should be what it is all about, and that is to the betterment of New Zealanders. Thank you.

I am pleased to take a call on the Committee stage of this bill. Can I firstly commend the member Chris Bishop, who is sponsoring this bill and who has brought it through the House to this point. It is a very worthy bill that meets a serious, serious issue and a serious need that afflicts many, many patients out there. I think of just the many people whom I have come into contact with who are undergoing renal issues, or who have to do dialysis and are awaiting transplants. It is just a very unfortunate situation, and they are all hoping that they can have a donor to donate a new kidney for them. So, yes, this is a worthy piece of legislation. Can I also commend the Health Committee, because it has done the heavy-duty panel-beating on this—because if we look at the bill it is pretty much all rewritten. It has been rewritten, and there have been very large improvements made to the bill, and we do commend the work that it has done.

I wanted to raise a point regarding the entitlements. We know that on application to the Director-General of Health there is a set definition of what is a “qualifying donor”. For a qualifying donor there is the entitlement to a 100 percent financial support over the 12-week period of recovery following the surgery in which they donate their particular organ. But there is a second part to the application process, under Part 3 of the bill, and that involves a discretion that the director-general has to provide an entitlement for work that is done prior to the actual surgery itself. That is a discretion that the director-general has to grant financial support to the donor for undergoing tests or any other medical procedures that may be required in preparation for the surgery itself.

I just wanted to draw the Committee’s attention to what I think is an inconsistency in the drafting. If we look at Part 3 and we go to clause 16, it says: “A person must apply to the Director-General in writing if the person wishes to—(a) be a qualifying donor; or (b) receive discretionary earnings compensation.” In that clause there, we are talking about alternatives. Either there is an application to be the donor, “or”—so they are quite separate. I guess the “or” in that clause is there to link alternatives.

But if you look at the provisions to do with the granting of the discretion that the director-general has in clause 12, you will see that the discretion can be given only to a qualifying donor. So the applicant has to be a qualifying donor to meet the test to actually receive that discretionary compensation. Yet in Part 3—the application that is made—it is not a requirement, I guess, that the person who does apply be a qualifying donor. So in my reading of it, it does apply to a person applying to the director-general solely for the director-general to apply the discretion for compensation prior to the actual surgery itself. So I just question the use of that definition of “or”, because they are quite separate requirements in that clause—they are not linked. I would imagine that, obviously, the applicant would want to be a qualifying donor, but the fact that this has been separated out as an either/or scenario does not quite follow, in my reading of it. So I think it might be more appropriate if it was an “and/or”—you know, if there was an inclusive-type definition to cover both scenarios.

For those who are currently reflecting on the events of today, which will end up being historic, I have actually just spent the dinner break at Tātarakihi—The Children of Parihaka, at the invitation of Marama Fox, and I have spent that time with my Youth MP, Leah Bell. It does put things in perspective.

It is a pleasure to stand here tonight and speak in the Committee stage of the Compensation for Live Organ Donors Bill—and it is much more appropriate that we call it compensation, rather than financial assistance. I take my hat off and appreciate the love and the generosity of people who offer to donate their organs. For them, it is not about the money. For a lot of people, it is about the care of a loved one, although there are some very amazing people who choose to donate an organ to a complete stranger. I think that really takes some courage, so I would like to thank anyone who has been able to do that.

This bill has been brought to the House as a result of a member’s bill from our member Chris Bishop—so thank you, Chris—and I will acknowledge Michael Woodhouse prior, and I think it was Cam Calder before that.

💬 Chris Bishop: That’s right, Cam Calder—Dr Calder.

Yes. So we are finally here. When bills like this get here, it seems like a simple process about which everybody thinks “Hey, that’s a great idea.”, but when the Health Committee actually did come to work on this bill, there were quite a lot of fish-hooks that needed to be taken care of—specifically, how this bill related to other bills. So we spent a lot of time talking about cost neutrality, because it was important to the intent of this bill.

This bill is not going to be a silver bullet, but it is a significant change to how we encourage organ donations. A lot of people have had donations from victims of car accidents, and, as we know, there are a lot of people who offer to do that. They put that on their driver’s licence or they intend it in their wishes, and then, when the time comes, the family, for whatever reason, decides that it is something they cannot go through with. So we have heard from previous speakers tonight that there is more to be done in this area, and it is important that at some stage in the future we look at that further.

In the meantime, I am just really thankful for those donations of organs from those families who have lost loved ones in car accidents. A lot of what we talked about was about what a fair and reasonable compensation was, and that is how we came to the rate of 100 percent of the income. For some people they really dearly wanted to do this but did not have the financial capability to be able to do it, and I think it is only fair that if someone takes that time out—and it is time out, and it is a big decision—that should not have any detrimental effect on their income or deprive them of the ability to be able to do it. So I think it was really important that we went to that 100 percent rate and that no one is out of pocket for doing this.

We also made an effort to futureproof this piece of legislation, because, as we know now—most of us really talk about kidneys as the main one, but as science and technology and medical advances progress we are going to find other organs that we are going to be able to transplant, and we do not want to be back in the House doing another piece of legislation every time we have an advance in medical technology. So this is futureproofed.

I want to say what a pleasure it is, always, to work on the Health Committee under the chairmanship of Simon O’Connor. It is a committee that works extremely well together. As we have worked through this bill, which has had its frustrations in terms of taking a little bit more time than we originally thought it was going to, I think we have worked a way to get this into a really good state, and it has been a pleasure to be part of it. I look forward to the next stage in the third reading. It is a really big pleasure to take this call. Thank you.

Let us start with the assumption here, which I think this bill works under, and it is that donating our organs is a good thing—OK? It gives quality of life to people who have not got it or, better still, it actually saves lives. So when I look at clause 9 in this, I wonder why this is limited only to people whose surgery is carried out in New Zealand. I am talking about paragraphs (b) and (c) of clause 9(1), where the qualification is that the surgery must be carried out in New Zealand and “the recipient of the organ is eligible to receive services funded under the New Zealand Public Health and Disability Act”.

The reason I ask this is that medical science is advancing at a great rate of knots. It is one of the areas where a significant amount of money is being invested around the world, but more so in other countries. I would have thought that if we started with the premise that saving lives or giving quality of life is the overriding premise—if, in fact, a person is better served or the country is better served or our community is better served by the donor and the donee going across and having the surgery in Australia or America or Israel or anywhere else around the world, and that is going to actually create a benefit over and above the cost, then why would we not make provision for the donor to actually have compensation no matter where this is undertaken? Keep in mind that this is not talking about the payment for the surgery itself; it is talking only about the compensation to the donor. So my question to Mr Bishop, the member in the chair, is this: why limit this to New Zealand?

One of the unintended consequences here may be that as a result of this bill, a number of people decide they can now afford to do this because previously they could not see a way forward even though they wanted to do it. An unintended consequence is that, in fact, the number of surgeries required to meet the demand reaches a point where the waiting list is such that it does not meet that overriding objective of saving lives. I would have thought that in order to overcome this, what we should do is say that no matter where that transplant takes place, the donor is going to be compensated. So do not just limit it to New Zealand, because what we do know is that the New Zealand health system actually, under certain circumstances, for example, sends patients to Australia. It certainly used to.

My question is that if advances in medical technology are occurring at a great rate of knots in other countries where the surgery could be expedited and lives saved and the overriding outcome or objective of this bill met, then why do we not open this up to every country? Why do we not say that no matter where the donor goes to have the surgery, or the donor and the donee go to have the surgery, we are going to pay compensation? If that means that the donor and the donee have to come up with $50,000 to go across to America to have the surgery, then so be it. But I do not think that it should be limited purely to New Zealand, because I think the unintended consequences of this may be that the overriding purpose of the Act is actually denied, which is to save lives and to increase quality of life.

There may well be a rationale for this that I have just completely overlooked, but I have looked through the reports, I have looked through the regulatory impact statement, I have looked through the debate pack, and I cannot see any reason why this must be in New Zealand. Whether this is an oversight or whether we think we are actually doing the New Zealand medical industry or our surgeons a service or not, I am not sure. Ideally, of course this takes place in New Zealand. Of course that is the ideal, because we know that the costs to both parties, or any parties, of heading overseas are going to be high. I just think that what we need to do is remove the words “carried out in New Zealand” from clause 9 and just say that we are going to compensate the donor no matter where this is undertaken. Or, if you really wanted to tighten it up, you would name a list of countries that we think have an acceptable health service.

Kia ora, Mr Chair. Just a quick call on behalf of New Zealand First. Just a comment on the contribution by the member Stuart Nash, who has just resumed his seat, New Zealand First had not considered that at all—the argument put forward by Stuart Nash. There is trade in organ donation in the world and also there are different standards of surgery throughout the planet. So I would suggest that the Health Committee—and we think, quite rightly—has settled on 100 percent support for those individuals, those New Zealanders, who provide this gift to other New Zealanders; they should be supported at 100 percent.

But I personally, and I think my New Zealand First colleagues would support me in this—we would like to be assured that the people carrying out the surgery were of a standard that if there were any complications we could be confident that they met a certain standard and the complications were unforeseen, as opposed to perhaps getting a cheap operation somewhere else on the planet. That is an interesting situation put forward by Mr Nash but not something that New Zealand First, I think, had considered at this stage.

I would, however, be interested in the member in the chair, Chris Bishop, taking a call. Firstly, can I congratulate the member in the chair on his member’s bill getting this far. I do not sit on the Health Committee but I am aware of the work that it has done, the effort that the member has put in, and how vital this bill is with regard to the support. Ms Kuriger mentioned those who pass on, who have signed over organs so that others can live, even though their families are facing great tragedy. But what we are talking about here is supporting living New Zealanders to continue with their life and to be compensated—well, not compensated actually. We are not selling organs. We are merely supporting New Zealanders who provide a gift to other New Zealanders.

But I would ask the member in the chair, if he would like, to stand and perhaps say—as I say, I am not on the Health Committee—what consideration has been given to the futureproofing of the situation with regard to 3-D printing of organs. At the beginning of this year actually, the first toddler in America had a 3-D printed liver, and there has been quite a lot of research done with regard to 3-D printing of organs so far, or the possible future of it. So I just wonder whether the member has considered it, and whether the futureproofing in this bill, referred to by Ms Kuriger and other speakers, covers the capacity of 3-D printing around living tissue.

I would be fascinated if the member, Chris Bishop, could rise to his feet and give, perhaps, a small comment about his knowledge of that area and how that technology and the growth of that technology has influenced this bill that we have before us. Would the bill need to come back to Parliament, for example, if the leaps in technology that are being made right now with regard to this particular area are covered inside this legislation? Or is it an area that we will need to come back to as a Parliament, to consider compensating either the individual having to undergo the surgery, perhaps, or the individuals who are researching or printing it? It is an interesting area, and it is disruptive technology, which I think we are going to find going forward.

But at the end of the day New Zealand First congratulates the member on seeing a need. There are some areas around encouraging New Zealanders, living New Zealanders, to provide, to donate organs in this way, to other New Zealanders. There are some areas of cultural sensitivity that need to be addressed when these things happen. We know that Māori, for example, are among the highest recipients of organs, or in need of organs, from other New Zealanders, and we understand there are some cultural sensitivities around that.

We would, firstly, welcome comment from the member with regard to 3-D printing and the possibilities of the future for that, but at the end of the day, we support the legislation. We hope that more New Zealanders will now be encouraged to provide this gift to others, whom they may or may not know, and that they understand that the capacity of giving an organ provides a greater expanse of life for these individuals. We acknowledge that it takes a lot for a member’s bill to be drawn and to get such consensus across the House. Kia ora.

As a member of the Health Committee, perhaps I can give some clarity to the thinking that went behind some of the decisions that we made as a committee in bringing the bill back to the Committee of the whole House. Firstly, I want to reference a couple of people whom I worked with, for whom this would be a very pertinent piece of legislation. Firstly, there was Richard. Richard was able to successfully get a kidney transplanted. Then there was my very dear friend Catherine Mary Jacobs, who was on dialysis for a long, long period of time and, unfortunately, died before she was able to have her kidney transplant conducted.

Why I reference these two people I worked with is because they both came to needing kidney transplants because they were diabetic. They had long-term diabetes—a condition that actually resulted in the fact that they had renal failure. Richard was lucky enough to find someone to donate a kidney to him and he went on for many, many years after that point to have a very fulsome, a very rich and active life. My friend Cathy, on the other hand, although she had a donor, was unable to then translate that into a transplant because of the financial implications upon that person who could have donated a kidney to her, but was financially unable to do so.

That is why we are here debating this bill, because it would provide an opportunity for people like my friend Cathy to reach out to her family and friends to find people who were compatible to donate a kidney, and for those people not to suffer any financial hardship because of it. Why that is important is because when we look at people with diabetes, they are often people who are Māori or Pacific, and there are increasing numbers of Indian people, but, particularly, Māori and Pacific people who may be impacted financially should they choose to donate a kidney to their family member. This bill is really, really important to that cohort of people.

I want to thank not only the select committee for the work that it did on this but actually the officials too, because, when you read through the bill, there is not a single section of it that has not been rewritten in some form. The officials have been instrumental in guiding us, providing us with information and advice, and then actually crafting this into something that has come back to the Committee in a decent form. I want to thank the officials wholeheartedly not only for that advice but for the drafting that they have had to do subsequent to that as well.

💬 Hon Christopher Finlayson: Thank me, cos I arranged it.

And, OK, if the Attorney-General wants some thanks as well then great.

The reason we are talking about the difference between compensation and financial assistance, which is why we have changed the title of the bill, goes back to my original argument. It is actually about ensuring that we can provide for the number of people who are seeking transplants in this country, who may have somebody lined up to help them, but for whom there will be an impediment unless they are able to be compensated for the wages or the income that they will forgo. It is not about going overseas to have transplants; it is about being in the New Zealand health system where you can have the appropriate safeguards and review of any of those procedures. Let us face it, for people who have kidney donations, particularly—because that is the bulk of the transplants currently carried out in this country—their life improves exponentially because they have had that opportunity.

We really want to encourage people to donate and that is the whole purpose of the bill. Indicating on your driver’s licence that you are an organ donor does not actually provide for that donation to occur, because sometimes our whānau, at the time of our passing, make some decisions that may not have been what we would have decided if we had been able to. It is really important if you are going to want to gift your organs that you talk about this with your whānau before anything untoward happens, and that your whānau, your family, are really clear about your wishes and how important it is to do that—for people like Richard and my friend Cathy.

Let me just deal with a few of the questions raised by members opposite in the debate on this—in fact, on all of the bill, because we are taking it all as one question. Let me start with Mr Tirikatene’s questions on the bill. He wanted to know why the word “or” is used in clause 16(1) of the bill. The reason is that to become eligible for discretionary earnings compensation, which is the compensation that would be paid to an eligible donor, in advance of an operation—so that is distinct from recuperation, post an operation—you have to get through the gateway of being a qualifying donor in the first place.

The qualifying donor section, which is in clause 10 of the bill, which is the key and substantive part, is where people become eligible to become qualifying donors, or not. If you become eligible to be a qualifying donor, you are entitled to that compensation post the surgery, post the donation of an organ—typically a kidney, as other members have made mention—and you are also eligible to apply to the director-general for some of that discretionary compensation. But the point is that you have got to get through the gateway of clause 10 in the first place.

The second question was from Tracey Martin, and this was about something that I had not actually considered before, which is 3-D printing. What do you do about 3-D printed organs—kidneys? I guess there are two things to say to that. The first is that there is actually an argument that it would be outside the scope of the bill because if you 3-D printed a kidney, for example, would that be an organ donation? Perhaps not. It could just be one of the advances of modern medicine and it would not necessarily fall within the scope of the bill. Regardless of that and whether or not it is correct, Ms Martin will know that clause 4 of the bill, which is the interpretation clause, provides that a qualifying organ means a kidney, or a liver, or, in paragraph (c), any other type of human organ declared by regulations to be a qualifying organ.

In the bill, we are futureproofing the advances in modern medical technology. We are giving the Minister, through regulations, the ability to declare a particular type of organ to be a qualifying organ for the purposes of the bill. So it is a good question, but one that I think arguably is outside the scope of the bill, but, nevertheless, it is probably covered.

The third question was from Stuart Nash. He was very concerned about clause 9 of the bill, about why you would limit it to New Zealand. And, actually, I think Tracey Martin, in her contribution to the Committee, and I very rarely say this about contributions from Tracey Martin—I very rarely say this—but I am going to pay her a bit of a compliment. I actually think she answered that question herself. Before I even had a chance to stand up and speak, she answered that question herself. Actually, Poto Williams, in her contribution just before, said that overseas health systems have varying standards. We do not know very much about them in the New Zealand health system, and, actually, we want to make sure that this bill is focused on increasing organ transplants in New Zealand. We want to make sure we focus it on increasing the number of people who donate organs in New Zealand. We might be worried about varying standards overseas, and that is exactly the point that Poto Williams made and that Tracey Martin made, as well. So I think that deals with the three questions that have been raised so far. I thank members for the consensus support, I think, around the House, and I will hand over to somebody else.

Tēnā koe, Mr Chair. I am pleased to take a short call for the Green Party on the Compensation for Live Organ Donors Bill. I do congratulate Mr Bishop and the Health Committee. This is how select committees should work, not like with the Resource Legislation Amendment Bill, which the Minister for the Environment issued a press statement about today and which the Local Government and Environment Committee was not even allowed to report back to this House on—

The CHAIRPERSON (Hon Chester Borrows): But moving on.

—and where there have been closed-door negotiations outside of the select committee. But this bill—and I like Rino Tirikatene’s line about heavy-duty panel-beating because it has been completely rewritten in the select committee, with the assistance of officials, to bring back what was a very sensible bill in terms of providing financial assistance to people making live organ donations, to improve the way in which the financial assistance is considered, and to change the decision making and the gatekeeping—as Mr Bishop referred to it—from the Ministry of Social Development to the Director-General of Health.

It was interesting, I think, in terms of the points raised by some submitters that they thought the Director-General of Health was a much better decision maker here because of the difficulties people had had in getting assistance from the Ministry of Social Development, and the Director-General of Health is, obviously, much more acquainted with the issues around this.

There have been other improvements to the bill. When it was introduced, it was going to provide only 80 percent of the equivalent of what you get under ACC. The select committee changed that so that if you were donating an organ, it would be cost-neutral and you would receive 100 percent of the income that you would have received from ACC. That is a significant improvement.

As others have commented, our rates of organ donation in New Zealand are very low compared with countries like Spain. That is often in the area of organs being donated by people who have died, and this bill is restricted to live organ donations. It is interesting that New Zealanders consider themselves as altruistic people. Many people support the concept of organ donation, and I think that for those people who are extremely generous in donating an organ while they are alive, there have been a number of barriers to that. This bill is a really good initiative because it is removing the barrier of suffering financial hardship, because there is currently no compensation for lost earnings if you are on a benefit. But I think we need a much greater review of the whole system around organ donation generally—the institutional structures, the mechanisms available to support donors, the way in which the health and hospital services work for live organ donation, and also the donations from people who have died. There needs to be much more support there.

I think there is quite a comprehensive review happening. There are various papers on the Ministry of Health website, and this bill is a useful initiative not just for what it does in terms of providing an even playing field in relation to financial assistance but also for helping to raise public awareness of the issue of organ donation. When we have increasing rates of diabetes in New Zealand and the renal failure that goes with that, we are looking at more and more people requiring assistance there, so we need to increase our rates of organ donation.

One of the other things I would just like to comment on briefly is clauses 21 to 25 where there are dispute resolution procedures included in the bill. People can apply to the director-general for a review of his or her decision and the role of the director-general is in being a gatekeeper in determining whether people are actually eligible to get that financial assistance, which is more sensible than what was in the bill when introduced.

So the Green Party supported the bill at its introduction, We are very pleased by the very sound select committee process and the improvements to the bill as a result of the select committee. We hope that all bills go through a similarly robust committee process. Thank you.

Tēnā koe, Mr Deputy Speaker. I am pleased to take a call on the Compensation for Live Organ Donors Bill. I thank the member for bringing it to the House, but, more importantly, I thank the work of the Health Committee for knocking it into shape and giving it clarity for our debate tonight.

Of course, New Zealand has a low rate of live organ donations by international standards, and we want to improve that. I want to refer particularly to Part 1, Preliminary provisions, clause 3, where we talk about the purpose of this bill “to remove a financial deterrent to the donation of organs by live donors.”

I want to just reference the written submission provided to the select committee by the New Zealand Nurses’ Organisation. I see they didn’t appear, so I am going to highlight some very important points that they made in their written submission. Concerns they raised were that organ transplants are a health matter—and I know that that has been picked up in this bill; and the financial burden on the donors—and I am glad to hear from the member that we are talking about 100 percent compensation for those who are considering donating. The third point, and the bulk of my contribution, is the point around disparity for Māori and Pacific people. It is interesting to note, also, in the organisation’s written submission where it talks about the current number of deceased organ donations being 67 per year in New Zealand, and in terms of live organ donors it is 72 per year. If we look at those on the waiting list, it is acknowledged that there are about 550 people on the current waiting list.

But, as I said, there is a particular community out there in New Zealand, Māori and Pacific people, who face the greatest burden of what is called end-stage renal failure, ESRF, yet they are least likely to receive a kidney transplant. This is due partly to the transplantation body mass index (BMI) criteria, which does not take into consideration Māori and Pasifika body shapes and sizes. Questions should be asked whether the BMI threshold creates an unfair disadvantage for populations that are naturally bigger. The nurses also give some helpful hints in terms of not just supporting the bill—which they clearly do—but I want to just bring to the House their comment around recommending further research to be undertaken to capture the diversity of Māori and Pacific views on donations.

Perhaps the member Chris Bishop, when he does, if he wants to get on his feet and answer the question—going back to how I started with Part 1, Preliminary provisions, clause 3, where we say that we are addressing a financial deterrent—I want to ask the member whether he considered any other barriers that this bill should be addressing. I acknowledge to the honourable member that the financial barrier is a credible one, but I ask whether he contemplated any other barriers, as raised and identified in the nurses’ submission.

My further point to the member is the recommendation—again from the Nurses’ Association—around the further research on and, I guess, the education required for many Māori and Pacific potential donors; whether he has thought about how he would socialise that with the Government around the real need of addressing the disparity between Māori and Pacific renal failure and some of the requirements that the nurses have identified from the many years that they have worked with Māori and Pacific patients, to ensure that we can maximise the potential that this bill is trying to address by increasing live donors across the spectrum throughout New Zealand.

All I want to do in the time that I have been given is to impress upon you, given that you are a Hutt South - based person in Wainuiōmata, where you have got lots of constituents there who are facing several health considerations—I implore the member to consider that as he progresses this bill through. Kia ora tātou.

This bill is very welcome. I rise to take a short call. My Green Party colleagues and I warmly welcome the introduction of this bill and congratulate Mr Bishop and the Health Committee on the hard work that they have put into it, as is obvious by the extensive rewriting. We agree with the principle of 100 percent compensation for lost earnings. We think that is fair. We welcome the removal of discriminatory treatment against donors.

I am in a position, as many of us are, of having friends who have been organ donors or have received organs. From personal experience, I know that both sides of that donation are immensely difficult processes. I had the great honour of knowing Jonah Lomu, and I have a good friend who is currently on dialysis. The issues for organ donors are profound. This is a major undertaking, and certainly this bill, I think, recognises that by way of financial assistance. I welcome the title becoming more about compensation than financial assistance. But it is also a huge deal for the organ recipient, and I think we have to remember the people who spend long hours on dialysis—the pain and suffering that they experience with kidney failure, and the huge costs that are borne by families, by communities, and by the country as a whole.

The increase in quality of life when an organ donation is made and is successful is huge. The organ recipient is able to benefit from decent food, from water, from exercise, from travel, and from such an increase in the quality of life. This bill should, hopefully, enable New Zealand to up our rate of live organ donation. It is a worry that we have one of the lowest rates of organ donation in the world. As other speakers have noted, there are significant numbers of Māori and Pasifika who will benefit from this bill, and they are disproportionately affected by kidney failure. This is a good bill. It is good for those incredible donors, good for needy recipients, good economics, and good for our health system.

I just want to conclude that we should not really stop there. We should also be asking why we are having the level of this problem that we do. What is it that is causing such a high rate of failure of organs in New Zealand, particularly kidney failure? One of the reasons is that New Zealand has one of the highest rates of diabetes in the world, and diabetes causes complications for kidneys, which are particularly at risk from diabetes. Taking action on diabetes and obesity should be a major focus of our health policy. This is one of the areas where we spend an inordinate amount of money on measures to treat a problem, but we spend far too little time on prevention. Health prevention, with regard to diabetes, is important for our society, both at an individual level, at a community level, and for our country as a whole.

I should say that the issue is incredibly important to our Pacific neighbours. In many of the Pacific countries—I think, the latest figures show that nine out of 10 countries in the world with the highest rates of diabetes are Pacific Island countries. So we ought to be recognising that this is a problem for us here in Aotearoa, but it is also a major problem for our Pacific neighbours. Certainly, we would hope that the Government may be listening sympathetically when Green Party members stand up and talk about the need for sugar taxes, and when we talk about the need for proper health education around diet and nutrition. I would also add that we ought to be looking at the things that we export to the Pacific, such as waste meat exports, which are a contributing factor to diabetes in the Pacific. Again—I give my congratulations to the member in the chair and to the select committee on this bill. We strongly support it. Thank you.

Tēnā koe, Mr Chair. Thank you for this opportunity to contribute in the Committee stage debate of the Compensation for Live Organ Donors Bill. I want to acknowledge the member who was responsible for bringing this piece of legislation to the House, Chris Bishop, and also the Health Committee.

The relevance of this piece of legislation to many families is actually immense. We have a waiting list of over 550 New Zealanders requiring organ donation. Of those, 450 require kidney donation. I just have some statistics from the Organ Donation New Zealand Annual Report 2015. The longest surviving kidney transplant has been 42 years, 168 kidney transplant recipients have lived longer than 20 years, and another 30 have lived longer than 30 years. The relevance of this piece of legislation is huge. On average, in terms of the kidney donations, in 2015 there were 139, and, as my colleague Meka Whaitiri highlighted, of those donations, 72 were from live donors and 67 were from 46 deceased donors, and of those, five were Māori. So Māori are not participating in this particular area very highly, within a context of being some of the most needy in terms of it being us who require these organ donations.

In terms of international statistics, we actually have an incredibly low rate—it is 9.3 per million. France has nearly three times the rates of donation to ours, Britain has nearly two times more, and Australia has one and a half times more. What this piece of legislation is attempting to do is remove the barriers that have historically prevented a number of our families from donating. If the needy are Māori and Pacific, then it actually makes perfect sense that within that unmet needs base, which is approximately 70 percent of those who need organ donations—actually, our Māori and Pacific families and communities are not in a position to be the donor. I think this is going to create an opportunity now for Māori and Pacific communities to start talking about organ donation. I actually think that by removing that barrier, many more whānau members will put their hands up and say: “Yes, we want to be donors for our whānau, because it is not going to affect the financial viability of our families.”

What I really want to highlight is that in Part 2, I think that having the earnings compensation for up to 12 weeks is at the extreme end of that recuperation time frame. I want to commend the select committee and the officials for making sure that we provided the maximum time for recuperation, because for recovery from a kidney transplant, there is an estimate of between 2 and 12 weeks in terms of recuperation or rehabilitation post-transplant, so to provide that minimum—well, I guess it is a signal to the community that for up to 12 weeks, you will be able to be 100 percent compensated because we are not treating this as an accident, which is how this bill was introduced in the House. That is why it was under the accident compensation legislation, and how we ever assumed that donors were having an accident and that it was unexpected is an interesting little quirk in the legislation.

What I also wanted to highlight is that for the people who donate, there are a lot of emotional and psychological effects of the donation. I mean, it is not just a straightforward process, and some people do have detrimental consequences for their health and well-being. So it has also been good to see, under clause 10(4)(b), that if anybody requires more than the 12 weeks’ compensation, then a medical clinician can authorise an extension of that time period. I think that is an incredibly important clause in this legislation because it allows for the worst-case scenario, which is that somebody has an adverse event from being a donor, and to have that factored into the legislation I think is commendable. Kia ora.

The question was put that the amendments set out on Supplementary Order Paper 238 in the name of Chris Bishop be agreed to.

Amendments agreed to.

Parts 1 to 3, schedules 1 to 4, and clauses 1 and 2 as amended agreed to.

House resumed.

Bill reported with amendment.

Report adopted.