Organ Donors and Related Matters Bill

Thank you, Madam Chair. It’s a real pleasure to rise and stand in support of this bill. Just having a look back over the Organ Donation New Zealand website over the last few days, it’s a real reminder about how an organ donation can transform people’s lives—just looking at the stories there of people who had had liver transplants, lung transplants, and kidney transplants. Just to quote from Suzanne, who’d had a transplant: she said, after her transplant, basically, “All of my energy used to be spent trying to stay alive. Now I have a full-time job, a relationship, and I can go out with friends—it’s everything I’ve ever dreamed of.”

But the reality is that, unfortunately, in New Zealand there’s many more people waiting for an organ transplant than there are organs available. On the Organ Donation NZ website, what they’re saying is there’s about 550 people still waiting for a transplant in New Zealand, and so what this bill does is it’s going to be making it much easier for people to become organ donors.

I want to focus, just in this intro call, on Part 1, which looks at the compensation for live donors. What it does is it expands the eligibility for earnings compensation to include those who return to work part-time during the first 12 weeks after surgery. Up until now, it was an all-or-nothing decision. Basically, at the point where you returned back to work you lost the eligibility for that compensation. There are a lot of reasons why somebody may want to return to work part-time. If you think about some of the things that are involved in, say, kidney donation or any other donation, it is sometimes quite major surgery that’s involved, and so you could understand why people may want to return to work but they may want to return to work at reduced hours. So what this bill does is it lets people return to work at those reduced hours and still claim compensation for that.

The bill, when it was introduced, defined usual hours as the average weekly hours of employment at the date of application. But the problem is that that was a bit vague, and particularly if you are thinking about people who were self-employed. As a select committee, we had some discussion around this, and we thought we needed to make that clearer. And so the suggested amendment there is defining usual hours as the donor’s hours per week, as specified in their employment agreement—fairly straightforward, except if you’re self-employed.

So then, if that doesn’t apply, what we are suggesting is that then you actually calculate usual hours based on what your earnings were in the 12 weeks prior to when you made the application. And so that gives a good reflection of what your usual hours are likely to be.

The other thing that Part 1 also looks at is allowing regulations to be made to approve oversees organ exchange programmes, because, in terms of making sure that we can get enough organs, it is useful to be able to be involved in international exchange programmes. Basically, what this bill does is for donors who participate in these approved programmes, it removes a requirement that the donor and the transplant surgery have to happen in New Zealand and that the recipient needs to be eligible for publicly funded services in New Zealand. So, basically, that allows exchanges to happen.

What we’ve added is a new Schedule 5, that’s included in Part 1, that, basically, creates a list of approved organ donation exchange programmes. The first one to be added to this list is the Australian and New Zealand Paired Kidney Exchange Program, so that if you are engaged in an approved programme, then that means that some of those other requirements don’t need to apply.

The issue, though, was that there was some concern that we may have inadvertently allowed overseas-based donors to become eligible for earnings compensation when they were taking part in the exchange if they were already receiving funding in their own country, and so some proposed amendments were made in Part 2 to ensure that if you were eligible for compensation in your own country then that would apply, rather than us also needing to compensate people as well.

So Part 1 is really important in terms of just making it easier for people, for live donors, to make a donation but at the same time receive compensation, and allowing the flexibility for when they return to work. So it is an important section. Thank you, Madam Chair.

Thank you, Madam Chair. It’s a pleasure to take a call in what I think will be a relatively brief committee of the whole House on the Organ Donors and Related Matters Bill because, as is often the case—mostly the case, I think—the Health Committee was very strongly unified behind both the intent of the bill and the need for changes to it. I note the Minister hasn’t brought any amendments to the committee for consideration, and, indeed, the Opposition doesn’t have any anyway.

I want to endorse the comments of Dr Craig. It’s not for me to repeat them, and so I will confine my comments to Part 2. With your indulgence, Madam Chair, I want to actually talk about some suggested changes by submitters that, after careful consideration, neither the committee nor I—actually, as a matter of fact—would recommend for amendment in the committee of the whole House.

It relates to the functions of the new New Zealand Blood and Organ Service. Now, we had a number of submissions along the lines of the fact that the bill did not provide sufficient clarity about the roles and function of the New Zealand Blood and Organ Service, which is what the name now is—or will be, when the bill is passed—thanks to the select committee’s recommended changes.

I want to specifically talk about the submission by Kidney Health New Zealand—some fantastic advocates for the role of increasing organ donation in New Zealand and the support of those with chronic renal disease who are either waiting for or have had transplants. I think the most pertinent part of their submission for me, in support of their case that our bill should more closely mirror the Australian Organ and Tissue Donation and Transplantation Authority Act, which was implemented by the Australian Parliament in 2008, is the graph that showed what was a marked difference in organ donation rates following the introduction and passage of that legislation. They were attributing that change to the strengthened powers that that authority had compared with what was being proposed in this bill.

They went on to talk about the issues of clinical governance, and also the concern that the blood and organ donation service is relatively limited in its degree of influence over the many other agencies and actors in the organ donation space. Both the Health Committee, during the select committee process, and also I afterwards having been approached by a couple of submitters, thought very carefully about this, and it seems to me that the answer may lie both somewhere in the middle of where the bill is now and where the Australian legislation is. But that does not necessarily mean that the bill should be strengthened. My preference actually is not for the legislation to be as prescriptive as the Australian legislation. I think there is merit in allowing the blood and organ service to articulate and carry out its functions with a little more freedom than was being proposed. But I should say this—and as one that aspires to be the Minister of Health in 10 months’ time, I will be watching this very closely—

💬 Hon Members: Ha, ha!

I didn’t think it was that funny. It’s what we would call in Government an aspirational goal in National’s year of delivery, which will be 2020.

But I think it’s really important that—we all agree what the goal of this organisation is. The question is: what resources will they need? What clear mandate do they have and how will they interact with the other participants in increasing organ donation in New Zealand? We changed the bill, actually, to increase the role of clinical governance. I think that was an important step, but we weren’t then very prescriptive in what that meant and how they would interact. I think the submitters had valid points in their submissions about whether or not the role should be strengthened legislatively. But I’m relaxed that we both have the right balance but also the right oversight to make sure that they are given the tools that they need to deliver what we all want to see, and that is an increase in the rate of organ donation in New Zealand. And I wish them all the best in that endeavour.

Tēnā koe, Madam Chair. It is a pleasure as the chair of the Health Committee to speak at this committee stage debate. But probably not so much debate; it’s really clarification on this Organ Donors and Related Matters Bill about the consensus reached within the committee to enhance the bill. And so I want to acknowledge colleague Michael Woodhouse for his earlier comments about how we engage in a collegial process, and this is another indication, from my perspective, of how we do that.

I, firstly, want to acknowledge the New Zealand Blood Service. The New Zealand Blood Service was formed in 1998, and their responsibility is to develop an integrated national blood transfusion process. And the reason I highlight that is in our deliberations, and as now encapsulated in Part 2, it’s very clear what the New Zealand Blood Service does. It’s very prescriptive. Their job is to gather the blood and then disseminate the blood to people who need it. So the rationale for us, essentially, adding “organ” to the current title—that is, the New Zealand Blood and Organ Service—was to actually just clarify that we have enhanced the remit from collecting and distributing blood to people who need it, to now collecting organs and distributing those to people who need them, and it’s a very simple explanation for the committee’s recommendation to the House.

I say that within the context of an area of need where, essentially, 550 New Zealanders are on a waiting list. Those people are waiting for hearts, lungs, livers, kidneys, and pancreases. And I’m sure there are eyes and other parts of the body that other New Zealanders need, but, essentially, in terms of the organs that we’re talking about, those are the essential ones. And so we have a current process of finding donors, and they are people who, essentially, are dying, and those people who are dying are in intensive care units on ventilators. It’s a pretty traumatic and horrific experience for families, and so we’ve had to rely on our clinicians and our medical personnel talking to families in that circumstance. And that’s about 1 percent of the deaths in New Zealand to find the organs for the 550 New Zealanders who’ve needed them.

What this bill is doing is it is now saying that live donors provide another vehicle, another option, for us to be able to provide these organs to New Zealanders who are on that wait-list. I want to particularly acknowledge now Dr Liz Craig’s very good summary of Part 1 of the bill, because, essentially, that is and was the main focus of this piece of legislation. It was to ensure that people who were giving organs to their loved ones, to their friends, to their family, or even philanthropically were compensated for their lost wages. And so the whole regime was about being very clear about who was eligible and then, based on their eligibility, what we were going to compensate them for, and compensation just by definition is a recognition of the loss of wages, in that people in doing that philanthropic act were now going to be reimbursed, for all intents and purposes, by the Crown.

And I want to highlight that, because I think the development and evolution of this particular type of giving, and the twinning process that will now be funded, now enables people who do not match the person that they want to give their organ to—it enables now a trans-Tasman coalition, which is called a twinning operation, where if I need an organ, I find a donor—it may be a member of my family. We don’t match, but then we find others in the system who will then be able to provide the person that I want to give to with their organ, and I will give to somebody else. People in New Zealand who do that—and now, based on this piece of legislation, we’re specifically recognising the Australian and New Zealand Paired Kidney Exchange Program—will qualify under this piece of legislation for that compensation that I just highlighted before. It’s the least we can do, I believe, as a country to recognise the philanthropy associated with donating organs, and it adds value to the current process that we’re engaged in.

First, can I just thank the members for their contributions this evening. All of the members who contributed, and others who did not, worked collaboratively and really quite well during the Health Committee stage to ensure that this bill presents as it does this evening. So I want to acknowledge that, if I can.

There were a couple of things mentioned by Mr Woodhouse with regard to this bill, and I think they are worth just touching on very briefly in my contribution. He is right; this isn’t an overly controversial bill. It is a good bill that came through a strong process. He talked about the fear or the need to not overprescribe a particular pathway forward for the organisation, and I want to touch on that, because I think that’s an important part to allow this organisation, the New Zealand Blood and Organ Service, to carve its path to strategise as it moves forward. We know that joining the two services—it was a good fit in that it helps with efficiencies and economies in terms of the administration of both services.

And I want to touch on another thing, too. While I know a lot of the focus in the bill is on the need to increase organ donation—in fact, donations right across the board, as blood, plasma and individuals joining the bone marrow register are needed as well—I hope and I’m optimistic that the relationship that I’ve had to date with both services will allow us to have a good strategy moving forward; one that is better aligned with the increasing deceased organ donation national strategy 2017, a strategy that came out that actually initiated quite a significant part of this bill.

I’m really excited, in particular, as a Māori, and for our Pacific Island peoples, as to what the opportunities are in this space for organ donation and for blood and plasma donation. We know that those communities are high users in this space, but low donors. And one of the challenges—touching on the point raised by Mr Woodhouse about being over-prescriptive in this process or at least in the pathway forward, I’m really looking for some innovation in how we are able to increase those numbers, how we’re able to encourage more people—in particular, Māori and Pacific peoples—to consider themselves for this great cause, a cause greater than themselves.

I don’t wish to delay the progress of this bill too much longer but, once again, I endorse my thanks to the committee, also to those who currently donate, also to those who have donated in the past, and a big thank you to those who will, hopefully, through this legislation and the pathway forward for this service, consider donation into the future. This is a good bill and I’m really proud, in my short time as a Minister, to be the lucky recipient of such a solid bill to help progress it through the House. I look forward to it passing through seamlessly and then getting on with the work with the new service. Kia ora tātou.

Thank you, Madam Chair. So just in my next brief contribution I’d like to just talk about Part 2 and expanding the function of the New Zealand Blood Service, because as I was talking about previously, in New Zealand, there’s many, many more people waiting for a transplant than there are organs available.

💬 Matt Doocey: In the old days, the Ministers used to come down to filibuster; even they can’t be bothered now. They’ve given up—it’s back to the backbenchers to fill it up.

💬 Brett Hudson: Mr Faafoi’s keen for his bill.

And so what the national strategy for increasing organ donation and transplant aims to do is to make—

CHAIRPERSON (Hon Ruth Dyson): Mr Doocey and Mr Hudson, can you be a little more respectful of the speaker?

—it much easier for New Zealanders to make their organ donation wishes known to their family. And, basically, what it’s also about is making sure that those decisions can happen appropriately in the health context, because some of the people that submitted to the Health Committee were talking about the fact that, in the context where decisions were being made about whether somebody was going to make a donation and talking to the family about it, it was the training of those health professionals in ICU at that point that was incredibly important in terms of helping families to have an informed decision about what their loved one’s wishes were. So there was a sense that having this overarching strategy and basically talking about how we actually improve the donation rates, and also the sense that there was a need for a national agency to oversee the strategy—because what the point of the strategy was was to raise the profile of organ donation and to support that effective clinical governance, and then just to work with the health sector to coordinate the whole process and provide that clinical support. So the New Zealand Blood Service was seen as the agency that was most appropriate, in terms of Crown entities, for overseeing this function because of the work they already did in terms of looking after blood donations within the sector.

So very simple—Part 2, what it does is expand the functions of New Zealand Blood Service to include oversight in clinical governance of the organ donation system and to support the transplant system. So making sure that we’ve got an entity that can coordinate that in terms of making sure that those donations are happening and that we’ve got a broader strategic view in terms of training staff and thinking about how we can ensure that people make their wishes known. Once enacted, this part of the bill, though, won’t come into force for two years after Royal assent, unless you get an earlier date fixed by Order in Council, because there is a certain amount of work that needs to be done to set up the new New Zealand Blood and Organ Service, which is going to be the new name of the new entity to perform those functions. So I won’t talk too much further, but just to say that this is a really good bill, a very simple bill, but I think it will make a big difference to many people’s lives. Thank you, Madam Chair.

Thank you, Madam Chair. It’s a pleasure to take a call on this in the committee stage. I really just want to take a short call; firstly, acknowledging the way in which the Health Committee worked together on this type of legislation in such a positive manner and the amount of positive input, along with the expertise, that many of the committee members bring—and their interest and heart—into these discussions. It is greatly appreciated.

Although the Minister in the chair, the Hon Peeni Henare, has touched on it, I am actually interested in teasing out a little bit more, because one of the questions that I have regarding this is in terms of donations of organs for Māori and Pacific. As we know, our whānau are very hesitant to actually make a donation of an organ, and, with the tapu surrounding that, we know that that’s something that we’re going to have to work through to get those organ donation rates up—whether being a recipient is an issue, or is it being a donor that’s the issue? I’m very interested in the concept of when a donor has gifted an organ.

What has been talked about in the past or could be a future way of moving forward through getting over the barrier of not wanting to be a donor or not wanting to receive an organ—a concept that has been discussed is that when the person who’s received the organ, when they live a longer life and eventually pass away, then that organ is then removed from the body and returned back to the whenua with the person—if it was a deceased donor, back into the whenua with them in their urupā. So is that something that needs more fleshing out in terms of how we get more people in the Māori community to get over the barrier of what is tapu, in terms of what we do with our organs. That is of great concern, particularly with our rates of diabetes and those sorts of things. How can we move our community forward so that it is considered a taonga that we’re gifting? So I just would be interested to hear a little bit more of the thinking of where the Minister would see this going.

And the other question I have relates to the retaining of the current clinical expertise: what is the plan in terms of how existing Organ Donation New Zealand services will transition into the new function within the New Zealand Blood Service? And will the current clinical expertise be retained? And how, also, will it be boosted, as well, to ensure that we have a service which is fit for purpose? As we want to increase our donation rates, we also will need to increase the service that will be providing that. So those are just a couple of questions. I’d appreciate some comment from the Minister. Thank you, Madam Chair.

Look, I will just close off on some of the good points that were raised by the members. To the member Jenny Marcroft: as I already mentioned earlier—with fear of prescribing a pathway forward and not allowing the new entity to innovate and think and strategise about how they might do that—I do share your concern about how we do increase Māori and Pacific people’s donations. One of the arguments that was brought to me as this bill was being developed was around the tikanga aspects and the tapu aspect, and I recall the response being quite simple: would you do it for your grandchild? And the answer was: yes. Look, I’m not saying that’s the answer, but you do raise a good point. Now’s the time for a solid debate, and I think that that debate can inform the strategising that the new entity can do.

You also talked about the ability to maintain the clinical expertise with regard to the transition, and I want to acknowledge the staff from both entities as they come together. Transition and change are not easy for most organisations or most individuals, and I’m confident that the Ministry of Health and the other players that are supporting them through the transition are making sure that those aspects are covered off. In fact, I’m reassured that they are, but we will continue to keep a close eye to make sure that, while the transition is happening, (1) the lights still stay on and that people can have confidence in the service that’s still available to them, and (2) that that transition happens as seamlessly as possible. Perhaps in the near future we can come back and, as a collective, given the strong work done by the Health Committee, share exactly where we’re going to head with it. But other than that, I think that’s really—we’ve fleshed this out well enough and I look forward to this bill continuing.

Parts 1 and 2, the Schedule, and clauses 1 and 2 agreed to.

Bill to be reported without amendment presently.