Financial Assistance for Live Organ Donors Bill Second Reading

Wednesday, October 19, 2016

Two months ago I met Robert O’Connor. Robert had driven over two hours on a Tuesday afternoon to tell me his story and lend his support for this Bill. Robert was a type-1 diabetic, diagnosed at 6 months.

I say was deliberately, because in March Robert received a life-changing call at 2am. There had been an awful, fatal motor vehicle accident. The victim was an organ donor, and the donor was a match, and the match was destined for Robert.

What’s remarkable about Robert is that this Bill we are debating today won’t even directly affect him at all. His kidney came from a deceased donor. His donor will never be compensated for their sacrifice. Yet he shares a trait with a lot of other organ donation campaigners, a passion and a commitment to helping others and saving lives which goes beyond self-interest.

This is a trait shared by the previous sponsors of this Bill and I would like to acknowledge my colleague Hon Michael Woodhouse and also Dr Cam Calder for keeping this important piece of legislation in the Members’ ballot. I am grateful for the opportunity to take up the cause and bring to the House a piece of legislation which will genuinely save the lives of many New Zealanders.

Can I also acknowledge the work of the Health Committee under Chair Simon O’Connor. The Committee give the Bill a tremendous amount of consideration and I thank the work of the officials who have enabled us to bring back a substantially improved Bill.

I'd like to thank my colleague Scott Simpson who, week after week, would swap with me onto the Finance and Expenditure Committee so that I could participate in the discussion and hear from the submitters first-hand.

We must acknowledge the many submitters, health professionals, advocates and organ donation experts that I have met with over the past year. They are strong advocates for improving our organ donation rates in New Zealand and I hope that this Bill, along with the Government’s review of deceased organ donation, will bring the change to organ donation rates that they are fighting for.

As I touched on briefly, this Bill comes back to the House in a greatly improved form. The essential purpose of the Bill remains unchanged – to remove a financial deterrent to the donation of organs by live donors. At select committee, we heard many stories of the financial hardship that live organ donors currently have to endure to help another member of society. I was moved by these stories, as I know other members were too. I’m pleased that we unanimously agreed that a change to the status quo is required.

In its original form, the Bill set compensation for lost earnings at 80 percent of foregone income, similar to ACC.

The committee received many submissions arguing that compensation should instead be set at 100 per cent of lost income.

I’m pleased the committee has agreed with these submissions, and recommended that the new Bill adopt a principle of cost neutrality for live organ donors. Live organ donors should be neither financially advantaged nor disadvantaged from donating. This is the position in the United Kingdom.

The analogy with ACC is inappropriate for a number of reasons. Organ donors are healthy before they donate and are only temporarily unable to work while they recuperate. There is no necessity to maintain a gap between level of assistance, and income from employment to incentivise return to work.

The second major change recommended by the Health committee concerns which entity is responsible for administering the legislation.

The committee heard a lot of evidence about the difficulties claimants had when obtaining financial support through MSD. This is totally understandable. There are currently very few claims for live organ donor assistance through MSD currently. Front-line staff are often unaware that the provision even exists. The committee has therefore recommended that responsibility lie with the Director-General of the Ministry of Health.

The committee has recommended a range of other changes.

Third, to allow for new entitlements be backdated for eligible donors to the date that the bill receives the Royal assent.

This will mitigate the risk that people intending to donate would defer the procedure until they became eligible. It also enables the Director-General to pay income compensation to a donor before surgery in limited circumstances.

Fourth, provision to future-proof the bill to allow by Order in Council a regulation declaring a type of human organ to be a qualifying organ.

Although kidney and liver transplants are the only type of live donor organ transplants carried out in New Zealand, other types of potentially suitable live-donor transplant are medically possible and are carried out in other countries (including small bowel, pancreas, and lobular lung transplants.

Fifth, the committee has recommended amending the title of the bill to “Compensation for Live Organ Donors” to reflect the focus on providing donors with compensation for lost income rather than merely providing financial assistance.

The amended Bill deals with the objections to the Bill raised by the Attorney-General in his section 7 report on the Bill as introduced. The Attorney considered that the bill disadvantaged individuals who receive a benefit and also earn income from working. This is because the bill compensates organ donors for lost work income only if they are not receiving a benefit.  Thus the original Bill was inconsistent with section 19(1) of the Bill of Rights Act.

The proposed amendments to the bill would mean donors would receive reimbursement for 100 percent of forgone employment income, regardless of whether they are a beneficiary.

Let me close by returning to where I started, which is about the motivation for this Bill.

New Zealand has a low organ donation rate, with a large waiting list. There are more than 700 people accepted for a kidney transplant and around 40 people for liver, cardiac or lung transplants.

Organ donors save taxpayers money. Evidence put before the committee from the NZ Initiative and Dr Elizabeth Prasad suggested that every kidney transplant saves the government over $120,000.

So we need to do all we can to encourage live organ donors. Donors substantially improve the lives of those they donate to. They save taxpayers money.

It is simply inequitable to effectively punish these national heroes as we do now.

It is a sign of a caring, compassionate society that we recognise sacrifice and support each other. This Bill does both, and I commend it to the House.