Blue Jackie: Human Tissue (Organ Donation) Amendment Bill — First Reading 
Blue Jackie: Human Tissue (Organ Donation) Amendment Bill — First Reading 
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Dr JACKIE BLUE (National) 
: 
 I move  
That the Human Tissue (Organ Donation) Amendment Bill be now read a first time. 
 It gives me great pleasure to speak to the first reading of this bill and at the appropriate time I intend to move that it be considered by the Health Committee. I say to my colleagues that there are many examples of laws passed in the House that improve outdated legislation make the lives of New Zealanders easier or make the work of Government more efficient. But bills that can claim to improve the quality of life or save the lives of New Zealanders are few and far between. This bill is one of them. I would like to acknowledge Andy Tookey who has lobbied for change for over 4 years. This is Andy Tookey’s bill. 
The Human Tissue (Organ Donation) Amendment Bill when passed into law will allow for an opt-on informed consent register where individuals can indicate which organs they wish to donate and can elect whether the organs are for therapeutic use or for the purposes of medical educational research. There is provision in the bill for those people who wish to register a clear instruction that they do not wish to be an organ donor under any circumstance. The bill also allows for registered donors to change their minds and opt off at any stage. This can be done in writing or orally in the presence of a witness. The bill also importantly allows for the wishes of the organ donor to be paramount and because the informed consent process is rigorous this means the donor’s wishes are clear witnessed and have legal status. 
The bill makes provision for both brain-dead and non-beating heart donors whereby the organs are removed after circulation has ceased. Importantly provision is also made for public education regarding organ donation. Countries with established organ donor registers that have resulted in an increase in organ donors link their success directly to education and publicity. 
The call for change has been evident for over 4 years. In 2002 Andy Tookey and 1169 others presented a petition to Parliament that requested a review of organ donation practices. The Health Committee tabled reports in November 2003 and October 2004 that requested urgent action to improve New Zealand’s organ donor shortage and provided information on how an organ donor register might work. Our donor rates have dropped further since the Health Committee reported back to Parliament. 
Contributing to the problem is the fact that there are fewer brain-dead patients as a result of medical interventions and fewer people have suffered brain injuries and brain haemorrhages. There is also a greater demand for organs. The threshold to go on a waiting list has been lowered and organ transplantation is now an option for more and more illnesses for which it was not contemplated a decade ago. New Zealand is facing an epidemic in diabetes with the numbers of people on renal dialysis and those requiring kidney transplants set to increase dramatically. The number of people who need a liver transplant is expected to double over the next decade due to liver disease that will result from the 25000 people with chronic hepatitis C and the 50000 people with chronic hepatitis B infections. Since 1998 the New Zealand Liver Transplant Unit waiting times have doubled and the waiting list mortality rate is now 32 percent. There are fewer transplant operations being done; the 2004 figure of only 105 was the lowest since 1996. Over 350 people are currently on a waiting list for organ donation. 
Kidney dialysis costs between $22000 and $45000 per year per patient. The savings to the health budget from performing kidney transplant operations is considerable. In 2004 1770 patients underwent renal dialysis and 43 percent of those patients were Maori Pacific Island or Asian. Maori are overrepresented in those statistics but for cultural reasons they are reluctant to be donors. When it comes to tissue matching ethnicity does matter and in organ transplants Maori are under-represented. I hope that Maori as a result of public education and debate amongst themselves will consider becoming donors. 
It has been estimated that one organ donor can save the lives or improve the quality of life of between seven and 10 people. Clearly even a small increase in organ donation rates would save the country in both human and financial costs. We therefore urgently need to raise the organ donor rate in New Zealand. The number of organ donors in New Zealand—only 40 in 2004—was one of the lowest in the Western World but last year it dropped to just 29. That equates to around 6.7 donors per million of population. As a comparison Spain at the other end of the scale has 39 donors per million of population the USA has 22 the UK has 13 and Australia has 10. 
It has been shown that donor rates can be improved by ensuring that all possible potential donors are identified that contact is made with the donor’s family in an appropriate way and through enhanced public education. That has been the experience of South Australia which has had a voluntary opt-on organ register since 2000. In 2004 its donor rate was 20 per million which is double that of the Australian-wide donation rate of only 10 per million. Last year because of medical intervention in brain injury patients which resulted in fewer brain-dead patients the rate dropped to 13 per million but this was still double New Zealand’s rate. South Australia links its success to a team approach of identifying donors working with families and having a consent register that gives clarity to the donor’s wishes. The model uses medical donor advisers—intensive care - trained doctors—who work with specially trained organ donor coordinators. Importantly they work as a team. The success of the South Australian model is such that Western Australia and Queensland are adopting it as well. 
With the proposed new Human Tissue (Organ Donation) Amendment Bill which provides for the opt-on organ donation register and a public education programme there is a very real expectation and hope that the vast majority of organ donors because of the process involved when signing up will inform their family and make their wishes and intentions crystal clear. I believe the organ donor register will help grieving families and the intensive care team by providing clarity in an emotionally charged and fraught situation. 
By voting for the bill to go to the select committee members will be supporting the vast majority of New Zealanders who also want change. There is growing evidence that members of the New Zealand population are not happy about the ability of others to veto their wishes to be donors. In 2004 Colmar Brunton ran a poll asking that very question—whether family members should be able to veto one’s wish to be a donor. A resounding 80 percent said no they should not. New Zealanders want autonomy over their bodies in death as they have in life. The proposed Organ Donor Register will serve this purpose. 
I say to colleagues that I have been heartened by the positive feedback from New Zealanders and by comments made in newspaper editorials supporting this bill. The “tick a box” licence is not informed consent and is meaningless. In the face of declining organ donor numbers internationally there is a steady stream of countries implementing organ registers. In the USA 43 states have a law stipulating others cannot override donors’ wishes and so do some 26 European countries. Some countries have presumed consent registers where everyone is presumed to be a donor and must physically opt off if they do not wish to be. I urge all members not to invent the wheel but to let all those countries that do well in organ donation become our model for a better system that would not only respect individuals’ wishes and be kinder to grieving families but would save the lives of those who would die needlessly. 
I have canvassed the opinions of intensive care doctors and transplant surgeons who have concerns about a donor register. I totally respect the important work they perform in the most difficult of circumstances but I believe this matter should be democratically debated in the Health Committee. I welcome the comments of colleagues in the debate. The Human Tissue (Organ Donation) Amendment Bill has been drafted so that it is a vehicle that can be amended and refined. I urge members to vote for the first reading of this bill so New Zealanders can have that debate and input at the Health Committee.