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Organ donation back in the Too Hard Basket (Again)

GiveLife NZ
28 September 2007
Parliament puts organ donation back in the Too Hard Basket. (Again!)
Parliament's Health Select Committee have today released their long awaited report into organ donation.
In a surprise move, they have recommended that there be no register at all. Therefore this completely scraps Dr.Jackie Blue's Private Members Bill for a legally binding register and overturns their own recommendations twice previously for a register.
Andy Tookey of GiveLife NZ who co-wrote the proposed legally binding register legislation with Jackie Blue is absolutely stunned by their announcement.
"Most of the MP's involved with this process said in their press releases, and in their speeches on the first reading of the bill(s) that they were pleased it was coming in front of the Health Select Committee as it was about time they fixed the problems with organ donation once and for all.
What they have just announced has put us backwards by five years. There is not one single item in their report today which goes towards making any recommendations for fixing up a system that they themselves have said badly needed fixing. They have deferred the decision on a register into the 'too hard basket' yet again.
I was under the impression that the whole point of their discussions was over whether it should be a legally binding register or a non binding register as all of them have agreed that the driving licence is not informed consent, you cannot specify which organ you would like, or not like to donate and non drivers can't record their wish at all. So to overturn two previous health select committee recommendations for a register makes you wonder why we spend tens of millions of dollars a year on financing select committees. It is certainly a fingers up to the majority of submitters to the committee who were in favour of not only a register but a legally binding one. And also to the 80%-91% of the public who in polls felt the same. It makes a mockery of the name of the building that they made these decisions in. 'The House of Representatives.'
If feel that The select committee has given in to the powerful 'do-nothing' lobby at the Ministry of Health who have been clear in their opposition to this from the start. It's a case of the 'tail wagging the dog.'
The Government tends to do what it wants and ignores select committees when it wants anyway. I hope this will be one more time and they will stick by their pre-election announcement of a register.
If not, then as there is such strong public support for a register I think it should be added to the growing list of things that should be decided by a binding referendum.
Jackie Blue must be devastated by the committee's decision as she has done so much work and spent so much time on the bill to help save lives, to have it thrown out in it's entirety, not just the register but the public awareness campaign and other suggestions to improve the organ donor rate as well is just a huge slap in the face.
Below are some extracts of what the MPs (who are or were) on the Health Select Committee said at the first reading of just Jackie Blue's Bill (doesn't even include the government bill.) Compare what they said then (last year) to what they voted for today..... (Though we do not know at this stage who voted which way - "Unanimous" is the text used in the reports.)
New Zealand First’s health spokesperson Barbara Stewart is disappointed that the Minister of Health has not accepted the Health Select Committee’s recommendation that a national organ donor register be established.
“This is the second time in a year that the Minister has rejected the advice of the select committee on the issue of organ donation, said Mrs. Stewart.
“If the Minister was serious about improving our dismal organ donation rates she would be taking a more proactive stance than simply deferring any action until next year at the earliest and possibly even further down the track, said Mrs. Stewart.
“We are left with the current driver’s licence system for recording organ donor preferences which many donors believe is an official record of their wish to donate but which in fact is a total waste of time.
“The Minister has passed up another opportunity to set in place a system which works and in the meantime people waiting for transplants are no better off than they were before the select committee considered this issue,” said Mrs. Stewart.
New Zealand First Press Release
We were pleased in New Zealand First to see that the bill discusses setting up an opt-on register. We believe that most people, when they tick the donor box on the driver-licensing application, believe they will be a donor, but this is actually not the case, unfortunately. There is no link between the land transport and the health databases. So one must wonder why people are asked during the driver-licensing process about becoming a donor, when their decision cannot be enforced.
Barbara Stewart - NZ First 3rd May 2006
Human Tissue (Organ Donation) Amendment Bill
but we must acknowledge that some action is better than no action. I am reminded of the saying that failure is not the worst thing in the world, the very worst thing is not to try.
Barbara Stewart - NZ First 3rd May 2006
Human Tissue (Organ Donation) Amendment Bill
The interesting thing is that Andy Tookey brought this issue to Parliament about 3 years ago, I think. The Health Committee considered it and wrote a report. We had a whole lot of recommendations, and basically the Government turned down most of them. I suspect that, really, this bill is implementing a number of our recommendations—for example, the establishment of a national donor register to replace the current driver’s-licence system. I personally feel frustrated at the length of time this has taken. We discussed this issue, and all members on the Heath Committee agreed that it was urgent and that it was a priority, yet nothing seems to have happened. So I am absolutely delighted that this bill will force the Health Committee to deal with the issue. I hope that we can deal with it as expeditiously as possible, because, frankly, I am frustrated at the seeming lack of action despite the petitions and the recommendations that we have already made.
Sue Kedgely - Green Party  & Chair of the Health Select Committee- 3rd May 2006
Human Tissue (Organ Donation) Amendment Bill
The other problem is that at the moment it is not clear what a request on a driver’s-licence application form exactly permits. It states: “Would you be willing to donate organs in the event of your death?”. As Barbara Stewart has pointed out, what does this mean—for what purpose? Would it be for a therapeutic purpose? It could be interpreted as giving permission for one’s organs to be used for medical research and education, which some people may not be happy about, at all. So, frankly, the driver’s-licence system, as we all agreed many years ago, does not work, and we need to scrap it. We need to set up an organ donor register, and we need much more publicity. Those are the sorts of things that are proposed in this bill—and were proposed to the Health Committee a number of years ago—and we hope that this time it will result in the select committee, or the Government, coming up with legislation that will address the situation and we will not have 2 or 3 more years of delay.
Sue Kedgely - Green Party  & Chair of the Health Select Committee- 3rd May 2006
Human Tissue (Organ Donation) Amendment Bill
This bill is long overdue. For years we have put up with the silly situation whereby upon going into an Automobile Association office to sign up for a driver’s licence, we suddenly, often unexpectedly, are faced with the chance to tick a box and say whether we are prepared to be a donor. Often we have not given it any thought at all, and we make a snap decision. I know of many people who did not tick the box because they could think of parts of their body that they did not want to donate, and other parts that they would be happy to donate. They did not get that option on the form, and therefore they ticked “No”. The other aspect is that two very unrelated things—a driver’s licence and an organ donation system—are linked together, and that very matter was one of the things the select committee looked at when Mr. Tookey petitioned us.
Judy Turner - United Future
3rd May 2006
Human Tissue (Organ Donation) Amendment Bill
I admit to some frustration with the New Zealand driver’s-licence system, and the farce that it is to tick the box to be registered as a donor.
Steve Chadwick - Labour & previous Chair of the Health Select Committee - 3rd May 2006
Human Tissue (Organ Donation) Amendment Bill
Another area of contention in the current Act is the lack of a national register for organ donors, as well as there being no choice as to what organs a person can choose to donate. For an organ donation system to work effectively, a national register such as the one Dr Blue proposes is necessary. This is because such a register would include non-drivers, unlike the current system, and would allow people to specify which organs they would and would not like to donate once they are deceased. As well as this, they would be given a choice about what their organs would be used for—for medical research or for donation to a fellow human being.
In 2004 the Health Committee considered the issue of organ donor rates and what could be done about increasing them. Although there have been efforts to act on many of the committee’s recommendations, it is clear that more impetus is required. New Zealanders deserve the chance for this bill to be examined at select committee level. There is a groundswell of public support out there for this issue to be examined. The articles, letters, and editorials in our newspapers are testament to this. We are under no illusion that there will not be difficulties in enacting what this bill proposes, but we would be letting down the people of New Zealand if we filed this one away in the too-hard basket.
Jonathan Coleman - National - 3rd May 2006 Human Tissue (Organ Donation) Amendment Bill
Organ Donor Register to be established
Thursday, 1 September 2005, 5:49 pm
Press Release: New Zealand Labour Party
1 September 2005
Organ Donor Register to be established
The Labour Government will establish a nation-wide Organ Donation Register next year.
Prime Minister Helen Clark and Health Minister Annette King made the announcement today while releasing Labour's full health policy.
Annette King says Labour is responding to a ground-swell of public opinion that New Zealand needs to improve our rate of organ donations.
"High profile cases like Jonah Lomu's show the value of donated organs, and have helped shape public opinion," she says.
"And the Andy Tookey petition to Parliament, lodged in 2002, has also raised the profile of the need to do better in this area."
Following a major review and consultation on changes to the Human Tissue Act, Labour has decided there is a need to have a comprehensive policy to increase the number of donated organs, Ms King says.
She says the Organ Donation Register will be administered by the Ministry of Health and final details will be worked out in conjunction with District Health Boards and Land Transport NZ.
"The issue of consent has stimulated considerable debate, and the Organ Donation Register will ensure that there is an effective, informed consent process, so that people who have indicated they want to be organ donors have their wishes respected."
Ms King says Labour has already established a national office called Organ Donation New Zealand to raise the profile of organ donations, and to work alongside health professionals and families.
"The Government has also already announced it will cover some of the costs incurred by live donors."
NZ Herald - 2 9 05
Labour plumps for organ donor record
Labour promised yesterday to establish a national organ donor register next year.
Health Minister Annette King said details would be worked out with district health boards and Land Transport New Zealand.
There would be an informed consent process "so that people who have indicated they want to be organ donors have their wishes respected".
Ms King said Labour was responding to the public's belief that New Zealand needed to improve its rate of organ donations.
"High-profile cases like Jonah Lomu's show the value of donated organs and have helped to shape public opinion."
King vow on donor register
02 September 2005
Health Minister Annette King said the register was a response to a groundswell of public opinion that New Zealand needed to improve its organ donation rate.
It was not a cure-all, but one of a raft of new initiatives, she said.
Under existing rules, New Zealanders can elect to be a donor on their driver's licence, but that is effectively worthless as it is not deemed a proper consent. It is the family who make the final choice.
Cabinet Papers on Human Tissue Review released
Thursday, 2 March 2006, 3:41 pm
Press Release: Ministry of Health
2 March 2006
Following extensive public consultation the Ministry made policy proposals to Government, which have been released today.
After receiving the policy advice, Government last year announced that a nation-wide Organ Donor Consent Register would be developed during 2006.
Lobby group says organ donor proposals don't go far enough
Posted at 6:00am on 3 Mar 2006
A group campaigning for a better organ donor system says Ministry of Health recommendations on the issue don't go far enough.
The Ministry recommends the Government continue with an organ donor consent register, announced last year.
It suggests three options for who can give consent for the person's organs to be used for science or transplantation.
But Andy Tookey from the group, Give Life, says the review is a cop-out because the options still let family members override the dead person's wish to be a donor.
The Ministry's chief clinical advisor, Dr Sandy Dawson, says the register will ensure there is an informed consent process. 

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