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 | | Andy Tookey and Katie - Andy Tookey | Organ Donor Report Wrong - Claim
XtraMSN Health & Fitness
Organ donor reform campaigner Andy Tookey claims the Ministry of Health gave wrong information to a Parliamentary Select Committee hearing into organ donation.
The ministry has been gathering the views of New Zealanders around the country on whether the law should be changed from the current system where relatives can decide if their dying family member should be allowed to be a donor or not, irrespective of the donor's prior wish.
Andy Tookey launched a campaign called GiveLife NZ three years ago to seek ways to increase organ donation after his baby daughter Katie was diagnosed with a rare, life-threatening liver disease, which means she will need a liver transplant. She will not be eligible for a transplant until her condition becomes critical. And then there might not be a donor available in time. If and when she gets her transplant, she may be too sick to survive it.
NZ lowest donor rate
Mr Tookey says New Zealand has the lowest rate of organ donation in the western world. The problem is not simply that people do not choose to be donors. Often, the grieving relatives refuse to allow the organs to be harvested - going against the potential donor's stated choice on their driver's licence. For example, only 37 actual donations were made out of 102 potential ones last year because of vetoing by relatives.
He wants to see the system changed so donors can be readily identified and their wishes respected. This would increase the number available.
In a media statement this week, Mr Tookey says Dr Gillian Durham, deputy director of the Ministry of Health, told the select committee that the views were "evenly split between the donors' wishes overruling the family wishes and leaving the system as is with a status quo".
"That was not the case," says Mr Tookey, who attended all the meetings around the country. "In all venues around 80 percent were in favour of changing the law to 'donor wishes prevail'. In fact, only two groups which had people involved with organ donation procurement heading those groups voted for status quo.
"This is not just my view but also the view of others who attended and even the view of the newspaper reporters who sat in on the consultations. I wonder if Dr Durham attended the same meetings?"
He says a recent Colmar Brunton poll also found that 80% of the public felt their wishes should override the wishes of family when it came to organ donation.
Mr Tookey is concerned that for the select committee to make an informed decision they must be in possession of the facts, "not what the Ministry 'would like to be' the facts".
A request under the Official Information Act 1982 to release the submissions for verification has been refused by the Ministry of Health.
Ministry responds
Dr Gillian Durham, Ministry of Health deputy director-general sector policy, responded to Mr Tooke's claims. In a statement to XtraMSN Health & Fitness she said:
"This is a matter for the Health Select Committee. When an allegation is made about a person through the Select Committee process there are specific procedures to be followed. This entails the person being informed of the allegation and the person concerned being given the right of reply.
"Mr Tookey has recently raised these concerns with the Health Select Committee and the Committee has invited the Ministry to respond. This process is under way.
"The Ministry is keenly aware that there are strongly held views about organ donation and is concerned to continue to present its advice as accurately and fairly as possible. The response to the Committee will take this approach and clarify any misunderstanding that may have occurred. It will be then for the Committee to deal with Mr Tookey's complaint.
"Mr Tookey raises a further issue in regard to an Official Information Act request. The Official Information Act request referred to by Mr Tookey was
declined by the Ministry to allow the Ministry's analysis of the submissions to be completed and referred to the Minister for consideration. It is usual process for a Minister to consider submissions before the information is placed in the public arena."
People afraid to be donors
A recent poll in XtraMSN Health & Fitness asking if readers would be willing to become organ donors recorded a majority "no". A follow-up discussion in the message boards reveals some people are unwilling to donate because they fear their organs will be removed while they still have potential to live - or that they will feel pain.
This fear is countered in the boards by a doctor involved with organ donation and the son of a donor himself. Read the discussion here and add your views.
Rosie Andricksen
XtraMSN Health & Fitness
03/08/04
Related reading
For more information on GiveLife NZ see the website givelife.org.nz
Kidney Foundation Wants More Donors
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Katie Tookey's story is on video.
Kiwis like Katie depend on 'the gift of life'.
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