Financial Assistance for Live Organ Donors Bill – First Reading Speech

Friday, August 14, 2015

Mr Speaker, I move that the Financial Assistance for Live Organ Donors Bill be now read a first time.

I nominate the Health Select Committee to consider the Bill.

I would like to start by acknowledging my friend and colleague Hon Michael Woodhouse who first proposed this bill as his own Members’ bill and whose reasons for doing so are very 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 in the ballot after Michael’s much-deserved promotion to Minister. It would also be appropriate to acknowledge the efforts of Dr Jackie Blue who previously attempted to improve the organ donation legislation through her own Members’ bill in 2007, and to also acknowledge the tireless campaigning of Andy Tookey who supported that bill and continues 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 which aims to deal mainly with two issues surrounding live organ donors.

The first purpose is to adequately compensate those altruistic New Zealanders who, through the goodness of their hearts, choose to donate an organ to a friend, loved one, or even a stranger.

The current compensation amounts to the equivalent of the sickness benefit and inadequately recognises and supports the hardship that these individuals face when they make the choice to give up an organ in order to save a life. This bill would allow donors to be paid up to 80% of their average wage for 12 weeks of recovery along with other childcare payments.

The second purpose of this bill is to reduce the financial barriers to becoming a live organ donor. While the reasons for New Zealand’s low organ donation rate 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 that we elevate such an important issue which impacts relatively few New Zealanders, but affects us all.

Like many other Members’ bills, and like the Hon Michael Woodhouse before me, I was motivated to take up this cause after meeting the very people who are affected by it.

During one of my first candidates meetings in 2014 I spoke with 68-year-old Sharon van der Gulik who had been living with renal failure for more than two years, could barely walk and needed 15 hours of dialysis a week.

Mrs van der Gulik’s story will be familiar to many New Zealanders, and like many in her situation by far her best option was a live kidney transplant. She was at one point given just two weeks to live and dialysis had become so awful that she could not think of continuing treatment past 70.

Fortunately for Mrs van der Gulik her incredibly brave 27-year-old grandsonMatt was able to donate her a kidney. However, it was tough for Matt. The $206.21 paid by Work and Income was not enough to cover half his mortgage and Mrs van der Gulik herself helped keep Matt financially afloat.

Mrs van der Gulik and her grandson Matt are 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. I am sure members in the House will know of some in their own constituencies.

I believe 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 significantly improve the life expectancy of donees.

Moreover, the current system favours the wealthy. If you have a relative who can afford to take 3 months off work without compensation and is a match then you have a good shot at getting an organ – if you are less well-off then you don’t. This is clearly inequitable.

The second issue the bill seeks to address is of New Zealand’s low organ donation rate.

I think it is relatively common knowledge that our rate of organ donation, both live organ donation and deceased, is one of the lowest in the world. Recent studies put our deceased rates at 8-9 donors per million people, compared to 17 per million in Australia and well behind world-leaders Spain at 35 per million.

More than 550 New Zealanders are waiting for an organ transplant and approximately 450 of these are waiting for a kidney transplant. People waiting for a heart, lungs or liver may die without a successful transplant while those waiting for a kidney transplant lead lives restricted by long-term dialysis treatment.

There are many reasons for our low organ donation rate, and the government has a wide-ranging work programme to address this issue. This programme is starting to work – the number of New Zealanders receiving an organ transplant rose from 176 in 2013 to 217 in 2014, a 23 per cent increase. This includes an increase in kidney donation from live donors, which is up from an average of 56 per year over the last decade to 72 in 2014.

One barrier to people being willing to donate is the financial sacrifice they are forced to make to do so. The Bill reduces that sacrifice considerably, and is therefore a small but useful contribution to the government’s wider work programme

In the words of Elsie Howard, 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.”

This Bill will likely have a small fiscal cost, but taxpayers will be better off if the Bill works as intended and increases organ donation rates. The reality is that taxpayers save the taxpayer a lot of money – this is good economics.

A recent study by Elizabeth Prasad at the University of Canterbury indicates that it costs $281,000 to treat a 50 year old male with dialysis over his expected lifetime at a 7 per cent discount rate, compared with $149,802.44 if he was given a transplant. There are therefore large fiscal gains for the government from increasing organ donation rates.

In conclusion Mr Speaker, 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 to address aspects of New Zealand low organ donation rate.

It recognises the large commitment these altruistic New Zealanders have to those in need and acknowledges how grateful we are to them.

Let me close this speech by paraphrasing the words of Dr Jackie Blue, who said during the first reading of her own organ donation bill that “we propose many pieces of legislation which 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.”

I commend this Bill to the House.