Organ Donation – Facts, Figures and Other Interesting Snippets (In no particular order) Updated 16 January 2006 Andy Tookey – GiveLife NZ In 2005 there were just 29 organ donors In 2004 & 2003 there were 40 organ donors In 2004 even with 40 donors NZ was the lowest in the Western World for the number of donors it has. In 2005, the US state of Arizona increased it’s organ donor rate by 52% In 2005 Western Australia increased it’s organ donor rate by 30% An ICU (Intensive Care Unit) audit of deaths and organ donation was done in 2002. It has not been done since, or if it has it has been kept quiet. I have been unable to establish if another one has been done as doctors/MOH have been evasive on the topic. Given the controversy on Organ Donation over the past few years I would have thought there would be an annual audit? I could understand why/if they have not done any further audits as the figures revealed what a shocking mess the system is in. The audit reveals the following: NZ has the lowest number of organ donors in the Western World at 9.6 donors per million of population. (Just 40 donors for the year 2004) at the other end of the scale is Spain with 35 donors per million of population. The audit revealed that there were 104 people who were suitable as donors but only 38 became so. ICU doctors did not ask for consent from 35 families and 31 families refused consent. It has not been revealed why the remaining people did not become donors, but some may have been down to doctors finding cancer/hepatitis in the organs. “Getting family consent to use children's or adults' body organs or parts for donation is unnecessary, misguided and leads to wasted valuable organs. Avoiding distress to parents was less important than saving lives. It was also hard to see why families could veto the use of organs from relatives who were registered donors. Families made the most noise, the deceased did not complain and potential recipients were not present." - Dr Martin Wilkinson, Senior Lecturer in Community Health at Auckland University. Where else in the economy would an individual or family be allowed to make a decision without question which would result in a cost to the state in excess of $1 million? One organ donor can save the lives of or improve the lives of between 7-10 people, so a conservative estimate is that 462 people died/quality of life degraded as a result of doctors not asking or families vetoing requests. Why are doctors doing the asking (or more to the point not asking) what happened to autonomy? It is morally and ethically wrong for doctors to go against their patient’s wishes. “The law doesn't actually say that the family must be asked, the family may object. The person lawfully in possession of a body after death - usually the hospital superintendent - may authorise donation if this is in accordance with the wishes of the deceased. On the other hand they may decline to allow organ donation if the family is opposed to the idea.” - Sir Geoffrey Palmer of Chen & Palmer in his submission to the select committee on organ donation. Transplant doctors/organ donor services (ODNZ) have said they will rigorously oppose a law making donors wishes binding. (Even to the point where they have publicly said that they will ignore the law if it is brought in.) Their reason for wanting the family to still be able to decide is that the dead body still has ‘spiritual’ and ‘cultural’ aspects. If the donor does not let those values stand in their way to opt to be a donor we do not believe that doctors/families should invoke it on their behalf. If doctors don’t want that bit of power taken away from them then why is it that they not asking the families in 35% of the time? In a survey of Australian and New Zealand ICU doctors one-third didn't believe it is their role to request organ donation. Although two-thirds believe the family should always be approached, another 52 out of 254 indicated that it was the ICU doctors role to decide if families should be asked for organ donation. ODNZ believe that more money should go into training courses for ICU doctors on organ donation/approaching relatives. Though in answer to Parliamentary Questions Annette King revealed that only 26 doctors had attended these courses over three years! More courses? You can lead the horse to the water…. “Many doctors felt uncomfortable discussing organ donation.” Wellington Hospital intensive care medical director Peter Hicks ODNZ reveal that in their surveys they find 90% of NZ’s are in favour of being organ donors. A TV One news Colmar Brunton poll revealed that 80% of those surveyed thought that no-one should be able to veto their decision to be a donor. It is not just next of kin who can overturn your wish to be a donor; even people who are not related to you at all can veto ‘your’ wish. If so many people are in favour of organ donation why not have an ‘opt out register’ as opposed the current ‘opt in’ one? It would be easier to track the 10% who don’t want to be donors than the 90% who do. (We currently have an ‘opt out’ register for cervical screening?) It will cost you $31.10c to change your donor status on your driving licence You can’t specify which organs on your licence; it’s all or nothing which puts people off. Though this may change with the new register? For the proposed new organ donor register (2006?) it is intended that people still put it on their licence, they are then sent ‘another’ form to confirm (more red tape) which will not induce more people to be a donor (will probably halve the current rate) Why not add it to next year’s Census. Or at least gauge public awareness of the issue and what their preferences are to different options? Doctors have said they will ignore the register and have admitted that they don’t use the driving licence presently. The Director of LTSA tells me they have no legal obligation to do anything about organ donation and quite clearly spells out that they have no interest in it, that’s why a lack of information on it at LTSA Centres? 26 European countries have an ‘opt out register’ The above countries have the highest organ donor rates in the world. Organ donation rates in Belgium increased by 183% after three years of the introduction of the presumed consent laws. Only two percent of the population in Belgium has chosen to opt out. NZ Health professionals agree presumed consent is the most effective system. Argentina introduced presumed consent laws last month. (November 2005) Canada has the same system as us (opt in) but over double the number of donors. (they have it in schools, positive reinforcement, part of driver education.) 43 American states have the law that no-one can override a donors wish (with more states due to follow) “The new laws, expected to be introduced in every state later this year, would change the rights of a deceased person's family.” - Federal Health Minister Tony Abbott (Australia) ODNZ/MOH says public awareness campaigns do not work (us with the lowest donor rate in the Western World) Countries that do well in organ donation say public awareness is imperative to their success. Who would we rather believe? “The increase of donor numbers in Spain appears to be linked to education and publicity so that relatives know precisely what views are held by their loved one at the time of death” Jackie Bradie: Donor Transplant Co-ordinator Team Leader on behalf of the Scottish Transplant Co-ordinator Network The ‘Nicolas Effect:’ an American child on holiday in Italy killed in crossfire donated his organs. The resulting publicity raised the rate of consent to donate by over 300% NZ Organ Donor service is not listed in any phone book… The British Secret Service, The American Secret Service and the CIA are listed in their phone books but the NZ Secret Organ Donor Service is not accessible easily for questions & information by the NZ public. Annette King admitted to Parliament that not a single dollar has been spent on public awareness in 4 years. “Why would we bother targeting 3 million people just for another 30 decisions a year?” Dr. Colin Feek, Deputy Director General of the Ministry of Health when asked by Parliament’s Health Select Committee why there was no public awareness. 30 ‘yes’ decisions could have saved up to/improved the quality of 300 peoples lives… Romania, a country that is not in the 'first' world listing is spending the equivalent of NZ $200,000 to promote organ donation this year. Sept 2002 Parliamentary question - Lynda Scott – “what is being done to increase the number of organ donors - Annette King – “ODNZ is funded to provide education to health professionals and increase public awareness.” November 2005, three years later there still has not been any. “Organ donation is one matter covered by this review. (Human Tissue Act 1964.)We do not want the issue of organ donation to wait while legislation is developed and would like to see it resolved expeditiously. We are concerned about the legal implications of overriding an individual’s wish to offer organ donation, because we note that medical specialists inevitably adhere to the family’s instructions, regardless of a person’s indication on a driver’s licence. We also consider it imperative that funding for Organ Donation New Zealand is used to facilitate community and family education.” – Press Release – Health Select Committee. “In the meantime, political procrastination and bureaucratic inertia will ensure that many more New Zealanders die from lack of a transplant before anything useful is done to set up an acceptable and efficient system to boost the number of organ donations.” - Garth George NZ Herald. 4513 (2005). Dr Paul Hutchison to the Minister of Health (5 April 2005): Can she advise when is the review of the Human Tissue Act 1964 expected to be completed? Hon Annette King (Minister of Health) replied: I expect to have a new Human Tissue Bill introduced to the House and referred to Select committee for consideration in 2005. This has now taken 4 years and a date is still not set. This is why the select committee wanted organ donation separated from all the other irrelevant factors that are in the review. In 2002, 33% of those waiting for a liver died. In addition 14% of patients were removed from the waiting list as they were too advanced in disease to be transplanted. Around 10 children a year a born in NZ with a liver disease that may require a liver transplant before aged one. The number of people needing a liver transplant is expected to double over the next decade, requiring more donors due the expected doubling of end stage liver disease from chronic hepatitis C. (Currently there 25,000 New Zealanders with hepatitis C, and 50,000 with chronic hepatitis B.) It costs the taxpayer $15 million a year to treat Kidney patients alone, Liver patients can cost $230,000 a year each in treatment also. "Even if the Ministry targeted a 20% increase in organ donation, they would save several million dollars. There are considerable cost benefits." - Professor Stephen Munn (Director of the Liver Transplant Unit) There is a machine similar to a kidney dialysis machine but for livers. It costs only $25,000. China has 60 of them – NZ has zero… “A complaint by people about the non-availability of transplant services would raise possible application of Right 4(3) of the Code, which states that: Every consumer has the right to have services provided in a manner consistent with his or her needs.” - Ron Paterson - Health and Disability Commissioner in a letter to myself. In NZ organ donors only come from ICU There are comparatively few intensive care beds in New Zealand compared to other Western countries. This may limit organ donation because of the practice of reducing admission to patients considered to have a poor prognosis and who therefore are not given intensive therapy right up to the time of death. New Zealand has 69 intensive care beds per million people compared to France 384, Australia 88, Spain 148, US 305. Donors do not need to come from ICU only (as is the practice in NZ.) Other countries (including Australia) use ‘non heart beating donors’ i.e. people who have died in hospital due to a heart attack etc. As opposed to the current system of only using people with head injuries or similar. At the Health Select Committee hearings into my petition on organ donation, the now Medical Director of ODNZ urged the committee to follow Australia. Since then Australia have introduced a law that families cannot veto a donor’s wish. The Medical Director has been silent on that issue since. The British Medical Association is in full support of an ‘opt off’ register. Why do doctors in NZ believe their ethics and morals are higher than doctors of all other Western countries? So far I have only seen reports from NZ medical ethicists supporting an ‘opt off’ register. I have seen no comments by any opposing. Donation rates among Maori and Pacific Islanders are the worst - of the 389 dead donors in the past decade only 4 were Pacific Islanders and 13 Maori. Maori and Pacific Islanders make up a significant proportion of those needing a transplant. Maori and Pacific Islanders make up 882 of the 1699 people on dialysis The ACT political party supports the view that if you refuse to be a donor when you die then you should go to the bottom of the transplant list should you need an organ whilst you are alive Why not pay the funeral expenses of donors? Each donor saves the government around 1 million dollars. Surely more people would sign up as donors if they knew it would take the financial burden off families? It’s not paying for organs as such. When you are dead you are not rich or poor, you’re just dead… 1.1 million People have ‘donor’ on their licence. 4482 (2005). Dr Paul Hutchison to the Minister of Health (4 April 2005): What languages are organ donation informational flyers available in? Hon Annette King (Minister of Health) replied: English Why no flyers in Maori/Chinese etc? (the communities that need most information.) 4508 (2005). Sue Kedgley to the Minister of Health (4 April 2005): What is the average cost of providing dialysis treatment to persons with renal disease? Hon Annette King (Minister of Health) replied: The Ministry of Health does not hold this information. “Andy Tookey of organ donation lobby group GiveLife NZ could not believe the statement by the Minister of Health that information would be collected on all types of transplants with the ‘exception’ of kidneys so did his own searching and discovered there is in fact very extensive data on kidney donors and recipients.” (Press Release) A further question asked how many people have died whilst on the organ transplant waiting list. The Minister again replied that “This information is not collected in respect of patients waiting for kidney transplants.” Though according to the Australia and New Zealand Organ Donation Registry (ANZOD), in 2003 (figures not completed yet for 2004) There were 263 people in NZ who died whilst on dialysis. Official figures show that there are around 350 people on the waiting list for kidneys. There are 1699 people on dialysis – if you are on dialysis it’s because you have failed kidneys, if you don’t get dialysis you die, so do these 1699 not need a kidney transplant (is there a slight manipulating of figures going on???) Live Kidney & Partial Liver Donors – The government is now paying around $165 - $240 per week to people who donate a kidney. The Minister of Social Development said “we were careful not to offer a financial inducement.” He actually said that with a straight face… As a live donor has to take off up to two months off work and pay for many trips back and forth to hospital both pre and post transplant and pay for their own hotel costs for overnight stays in Auckland why would anyone subject themselves to WINZ for essentially what is their bus fare? 4191 (2005). Dr Wayne Mapp to the Minister of Health (31 March 2005): Does a 'living' organ donor become elevated on the waiting list if they subsequently develop renal failure necessitating a transplant; if not why not? Hon Annette King (Minister of Health) replied: No. All kidneys are allocated according to the algorithm….. “Mr.Tookey also expressed concerns that even though ‘directed donation’ (Grant Kereama ‘directed’ that his kidney go to Jonah Lomu) is completely legal when you are alive or dead the Minister states “in practice organs would not be accepted for donation if there were conditions attached.” (Press release.) Iran has no waiting list for organs. They pay the equivalent of NZ $20,000 for organs. Transplant doctors in NZ have suggested paying $5,000 for expenses and a further $5,000 for ‘pain and suffering.’ Medical ethicists interviewed on the subject had no problems with that. What about an exchange programme for live donors? I.e. at present if you need a kidney and no family member is compatible you go on the list for a cadaver donor. With other families in the same position why not link them? I.e. “I’ll donate my kidney to your brother if you donate to my mother” type scenario. This works in America… The average wait for a kidney is 3 years. (unless you die first) ODNZ is to have an ‘advisory board’ advising it. In minutes of the meetings deciding the membership of the board obtained under the OIA it reveals that some members suggested having people ‘on the shop floor’ as part of the advisory committee, i.e. consumers or patient advocate groups such as the Kidney Society. The now Medical Director of ODNZ stated he did not want such people on the committee, but conceded to ‘maybe’ having a ‘lay person.’ The MOH did a series of ‘consultations’ of the Human Tissue Act 1964 to gain views from the NZ Population (organ donation being part of the review.) "Consult. To seek another's approval of a course already decided on." Ambrose Bierce 1842-1914… Initially, only people who had ‘registered their interest’ were invited to the consultations. (And you had to pre-register your interest.)After a complaint was laid by myself and others that there was no advertising for the general public to attend, the MOH countered that claim by saying it was advertised on the MOH website… It was, but not under anything as simple as a review of the laws on organ donation. It was buried in their site with the title: “Review of the Regulation of Human Tissue and Tissue-based Therapies Discussion Document.” I made a complaint to the Health Select Committee that the DDG of Health, Gillian Durham had misled them by saying that the review showed that people were equally split on whether the organ donor system should stay the same or should donors wishes prevail. She was widely reported in the press for saying that. (And I was present and tape recorded the statement.) The review showed no such thing. It was more than 80% in favour of the donor’s wishes. She subsequently wrote a letter of apology to the committee, but declined my request that she also correct the media. Despite the overwhelming mandate from the public that donor’s wishes should prevail I understand that the MOH is not recommending that to the government. (See earlier – “Consult. To seek another’s approval….”) TUCSON -- Arizona set a record for organ donations and transplants in 2005, posting an increase of 52 percent in donations and 36 percent in transplants. The results are dramatic, health care professionals said. The Arizona record in 2005 mirrors a nationwide increase in organ donations, which stagnated for years despite a dramatic increase of potential transplants patients on waiting lists. The increased donations and transplants in Arizona are the result of a revamped system of securing donations, overseen in the state by the Donor Network of Arizona. The improvement can be traced back to 2002, when a change in leadership at the state organ network occurred, and to a national push for more organ donation begun in 2003 by then-U.S. Health and Human Services Secretary Tommy Thompson. Thompson's agency studied hospitals across the nation with the most organ donors and determined what they were doing to be so successful. He then ordered all organ-procurement agencies, hospitals, trauma centers and transplant centers to use those techniques. Reported in the US media the same day that NZ reported the lowest organ donor rate in over 16 years at only 29 donors (10 Jan 2006) Some figures below are to 31 Dec 2003 some to 31 Dec 2004 Of the1699 on dialysis 882 were Maori/Pacific Islanders. In the past 5 years there have only been 9 Maori donors (1999-2003) In the past 5 years there have only been 2 Pacific Islander donors (1999-2003) In the same period of time in Australia they had 5 Maori donors Total number of donors for the same period of time = 195 (in NZ) Type 2 Diabetes makes up 94% of those on dialysis NZ is the lowest in the Western World for the number of donors it has at 9.8 dpm (2004) Poland was below NZ with 8.1dpm but through extensive 'awareness' have now gone to 14.6 dpm (2004) In the past 5 years in Australia the Organ Donor Coordinator requested organs from the deceased family 201 times In the past 5 years in NZ the Organ Donor Coordinator requested organs from the deceased family NIL times In 2004 families who donated organs had no contact whatsoever with the Donor Coordinator either by face to face or by telephone in 55% of cases (compared with Australia 2%) In the past 5 years Australia has used 31 non heart beating donors to boost their supply - NZ has used 3 In 50% of donors their occupation was not known (2004) Consent for hearts to be used for transplant was given by 30 families - only 7 hearts were retrieved though - only 6 used (2004) (Compared with 2003 when there were 35 consents - 25 retrievals) Total donors for 2004 = 40, of that 40 there were no request for bone donation in 30 cases, in the 10 that were requested all 10 were given consent, though incredibly none of the 10 were retrieved (if they didn't need any bone why did they request it 10 times?) Time from admission to brain death was not known in 27% of donors (2003) Compared to Australia at 0% (in fact 0% for the past 4 years) Time from ventilatation to brain death unknown in 25% of donors (2003) (Australia 0%) Of the 40 donors (2004) the driving licence of only 10 were checked for donor status In answer to written question 04466 (2005) Annette King states that one organ donor can save the life of, or improve the quality of life for up to 10 people with solid organs and 'a number of recipients' from bone donation. though in 2004 the average number of organs transplanted was just 2.8 There are no organised religions worldwide against organ donation. Even Jehovah Witnesses are not against it. (Blood is their issue) in 2004 a Jehovah’s Witness had a Liver transplant in Auckland. In fact Religions are in favour of donation as giving the ‘gift of life.’ World Transplant Games 2005. – NZ was in the bidding for this against Canada. Apart from the fact that these games attract the World’s media and promotes organ donation no end it also pumps around 5 million dollars into the local economy. NZ pulled out of the bidding giving it to Canada. I enquired why and was told that the Kidney Society (who was bidding for NZ) had to pull out as there was no government funding. The Kidney Society were told to, “try and get the money out of Lotto.” (By the government.) In a letter to me from the Director of the American Transplant Alliance I was told that the Americans were hoping to have the games in Canada,” but after reading about New Zealand we feel we need them more here.” (Canada has 24 dmp.) Finally! (though this list is by no means the complete list of problems) ODNZ say “talk to your family about being a donor as it is them who will decide.” I had a phone call from a man in his twenties who did just that. He told me that should circumstance permit he strongly was in favour of being a donor. He discussed it with his family as suggested. His father told him he was against it and would ‘veto’ his son’s wish. The son had called me as he wanted to know if there was any legal way he could exclude his father from doing that. Unfortunately, I had to be the one to tell him that his father’s wishes would override his own….