Financial Assistance for Live Organ Donors Bill

I move, That the Financial Assistance for Live Organ Donors Bill be now read a first time. I nominate the Health Committee to consider the bill. I would like to start by acknowledging my friend and colleague the Hon Michael Woodhouse, who first proposed this bill as his own member’s bill and whose reasons for doing so are similar to my own, which I will touch on in a second. I would also like to acknowledge Dr Cam Calder, who took up the bill and kept it on the ballot after Michael’s much-deserved promotion to the ministerial ranks. It would also be appropriate to acknowledge the efforts of Dr Jackie Blue, who previously attempted to improve organ donation legislation through her own member’s bill in 2007, and to acknowledge the tireless campaigning of people like, in particular, Andy Tookey, who support this bill and continue to support the cause of organ donation. I have had preliminary indications of support for the bill from many members in the House, and I thank them for that.

This is a very focused and specific bill that aims to deal mainly with two issues surrounding live organ donation. The first purpose of the bill is to adequately compensate altruistic New Zealanders who, through the goodness of their hearts, choose to donate an organ to a friend, a loved one, or even a stranger. The current compensation amounts to the equivalent of the sickness benefit, and inadequately recognises and supports the hardship these individuals face when they make the choice to give up an organ in order to save a life. The bill would allow donors to be paid up to 80 percent of their average wage for 12 weeks of recovery, along with other childcare payments.

The second purpose of the bill is to reduce the financial barriers to becoming a live organ donor. Although the reasons for New Zealand’s low organ donation rates are varied and many, one significant barrier is the financial hardship a donor suffers through lost wages and other associated costs of recovery. This bill will seek to address that issue by ensuring organ donors are supported in the same way that we support injury and recovery through the ACC system. This bill replaces and improves upon the 2005 ministerial direction, and it is only right and proper, in my view, that we elevate such an important issue, which impacts relatively few New Zealanders but affects us all.

Like many members’ bills, and like the Hon Michael Woodhouse before me, I was motivated to take up this cause after meeting the very people who have been affected by it. During one of my first candidate meetings in 2014, I spoke with 68-year-old Sharon van der Gulik, who had been living with renal failure for more than 2 years. She could barely walk and needed 15 hours of dialysis a week. Her story will be familiar to many New Zealanders, and like many in her situation her best option was a live kidney transplant. She was at one point given just 2 weeks to live, and dialysis had become so awful that she could not think of continuing treatment past the age of 70.

Fortunately for Sharon van der Gulik, her incredibly brave 27-year-old grandson Matt was able to donate a kidney to her. But it was tough on him. The $206 or so paid by Work and Income was not enough to cover half his mortgage, and Mrs van der Gulik herself had to help keep Matt financially afloat. Mrs van der Gulik and her grandson are, in my view, exactly the kind of brave people this bill attempts to support through proper compensation. There are numerous other examples of organ donors and donees around the country, and I am sure members will have their own stories from their own constituencies.

I think it is wrong that at the moment live organ donors are essentially penalised for their altruism, facing a large loss of income even though their actions save lives and contribute to a healthier New Zealand. Moreover, the current system in many ways actually favours the wealthy. If you have a relative who can afford to take time off work and make the financial sacrifice is entailed in donating an organ to you, and they are a match, then you have a good shot of getting that organ. But if you have someone who is a match but cannot afford to take time off work to donate an organ to you, then you are obviously in a less advantageous position. That is an inequitable situation; this bill improves upon it.

The second issue the bill seeks to address is New Zealand’s low organ donation rates. It is relatively common knowledge, I think, for members in the House that our rate of organ donation in New Zealand is low by international standards. It is about half that of Australia and it is well below Spain, which is the world leader when it comes to organ donation. There are more than 550 New Zealanders waiting for an organ transplant, and 450 of these people are waiting for a kidney transplant. People waiting for a heart transplant, a lung transplant, or a liver transplant may die without a successful transplant, and those waiting for a kidney transplant lead lives restricted by long-term dialysis treatment, which is very debilitating.

There are many reasons for this lamentable situation, and the Government actually does have quite a comprehensive and wide-ranging work programme to address that. That programme is starting to work. The numbers of New Zealanders receiving an organ transplant rose from 176 in 2013 to 217 in 2014, which is a 23 percent increase. This includes an increase in kidney donations from live donors as well, but it is clear we must do more.

So one barrier to people being willing to donate is the financial sacrifice they are forced to make. This bill reduces that sacrifice considerably, and I have described it as a small but useful contribution to the Government’s wider work programme to improve our organ donation rates. In the words of Elsie Howard, who was on the front page of the Dominion Post recently and who donated a kidney to her father: “You’re being penalised for working and then doing this for someone … If you want people to step up and donate, make it worth their while. Don’t make it so hard to do something for somebody else.” That quote really encapsulates what this bill is all about.

The bill will have a small fiscal cost, but I believe that taxpayers will be better off if it passes into law, if it works as intended, and if it does increase organ donation rates. The reality is that organ transplants save the taxpayer a lot of money. This is good economics. A recent study by Elizabeth Prasad of the University of Canterbury indicates that it costs taxpayers $281,000 to treat a 50-year-old male with dialysis over his expected lifetime at a 7 percent discount rate. That compares with $149,800 if he was given a transplant. There are, therefore, very large fiscal gains for the taxpayer and for the Government from increasing organ donation rates.

In conclusion, this bill greatly increases the support for those brave New Zealanders who every year sacrifice part of themselves to save the lives of others. It will also go some way to removing the financial barriers to live organ donation and help address aspects of New Zealand’s low organ donation rate. It recognises, rightly, the large commitment these altruistic New Zealanders have to those in need, and acknowledges how grateful we are as a country to them. Let me close my speech by paraphrasing the former colleague of my colleagues here, Dr Jackie Blue, who said during the first reading of her own organ donation bill 8 years ago that we propose many pieces of legislation that deal with Government efficiency, updating legislation, and making the lives of New Zealanders easier, but very few can lay claim to improving the quality of life, or even save the lives, of New Zealanders. This bill is one of them. She was talking about her bill, but I believe that is equally true of this bill, and on that note I commend the bill to the House.

I will just say from the outset that Labour has decided that we will support this bill to a select committee. Before I get started on the content of the bill, I just want to acknowledge Sir Pita Sharples, because, actually, his own wife just recently had a kidney transplant. So our thoughts—from the whole of Parliament, I am sure—are going out to Pita Sharples and his wife. I also acknowledge his son Te Hira Paenga, who recently blessed my, Kelvin, and Peeni’s office on West Coast Road in Glen Eden. So I am thinking of Pita Sharples and his family at this time.

This is an issue that many New Zealanders will look at and think: “OK, this needs to be done.” It is such a selfless act, for anyone to consider the idea of donating an organ while they are still alive. It is a selfless act, and so it is something that we support.

I do want to reflect back on Labour’s time in Government, when Annette King was the Minister of Health, when the Labour Government did attempt to address this issue. Annette King introduced changes in 2005 that put in place minimum standards for the weekly amount of income assistance granted to live organ donors, to offset some of the donors’ income loss. That was so that they could actually receive the sickness benefit, in terms of being able to hold them over while they took that time off work. The ministerial direction also provided for childcare assistance, and that could be claimed for up to 12 weeks after the operation. This childcare support will be continued under the new bill, which is good to see. Before the Labour Government’s changes in 2005, live donors had to rely on employment support to take extended leave.

We support referring this bill to a select committee, but we believe that there are some anomalies that may need to be fixed at the select committee, and we can have that conversation there.

What we see is that this bill would revoke the 2005 ministerial direction and increase the level of financial support to live organ donors to be the same as what would be paid to a donor under the Accident Compensation Act 2001 if the time off work had been due to injury, which is 80 percent of pre-operation earnings for a maximum period of 12 weeks. As I said, the bill also provides for childcare assistance for up to 12 weeks if the donor is the principle caregiver for a dependent child who is less than 14 years old, and the amount payable will be prescribed within the regulations.

We know that not only is it a selfless act to even consider donating an organ but also there is a period of time in which that person needs to recover. Considering that we have an issue in this country with the availability of organs for donation, then that is why we would consider this bill. We congratulate Chris Bishop on getting it pulled out of the ballot, and on putting it into the ballot in the first place, and—

💬 Chris Bishop: It was luck.

Luck. Well, take the win, Chris. It might be one of the few that you have.

The ASSISTANT SPEAKER (Hon Trevor Mallard): Order! The member is referring to me at the moment.

OK, apologies. Mr Assistant Speaker will have many wins, but Chris Bishop may not. So—

The ASSISTANT SPEAKER (Hon Trevor Mallard): No. The member will resume her seat. I mean, much as the member is trying to appeal to me, she must not bring me into the debate while I am in the Chair.

Apologies, Mr Assistant Speaker.

So there is that period of time when the person who donates the organ needs to recover, and we want to remove that stress. We want to make sure that they do not have that stress, and that when they are considering whether or not they will do this it is not one of the things that will put them off doing it, and that it is not one of the considerations they have to spend too much time stressing over. Of course, the issue around childcare is huge as well. “How will I earn money?”, “How will I feed my family?”, and “Who will look after my children?” are the considerations that those who are thinking of donating an organ whilst they are still alive will have.

We did look into some of the issues that we have with donations in New Zealand at the moment. There have been no live adult donors for liver transplants in the last 3 calendar years for adults, but there were five live adult donors for children in the last year. In 2014 there were 72 living donors for kidney transplantations, up from 58 in 2013. Although that is an increase, it is not a steep enough increase to meet the need that we are facing here as a country. So we will support the bill because if this is going to mean that we can meet the need of New Zealanders out there who are requiring organ transplants, then why would we not support this bill’s referral to a select committee to at least have that conversation. When it goes to a select committee we can have that conversation about what the anomalies are, about the changes that need to be made to the bill, and about any concerns that any of the political parties have. We can look at the submissions that come through and consider the concerns that are raised by the general public, as well, and so we look forward to that select committee process.

But, again, I just want to say that we commend the member for putting the bill in, and I just want to say that we look forward to having the discussion, considering the legislation, listening to the submissions, and hearing from the families whom this may benefit. I am sure that we will hear from families who were not in a position where they had donors who could provide organs for family members—who, unfortunately, may not be here right now. So thank you very much.

I am conscious that one gets 5 minutes in these speeches, and, as we approach the end of this evening, I do not necessarily want to break it up into two parts in the way that one might sort of have to break into a body to bring out donations. But I think that as we—

I regret that I have to interrupt the member.

Debate interrupted.

The House adjourned at 10 p.m.