GiveLife NZ Campaign for an effective Organ Donation System

Katie

NZ has the lowest number of organ donors in the Western World. Last year there were 29,000 deaths in NZ. Out of those only 25 people became organ donors.

Country Donors per million of population Spain35.1 Estonia26.5 USA21.3 Poland14.5 UK10.7 Australia10 Costa Rica10 Malta10 Cuba9.1 Chile8.3 Iceland6.8 New Zealand6 Hong Kong4.2 Mexico3

Why are we so low on donors? The Driving Licence Problems… donor

No provision for non-drivers No provision for non-drivers You can only tick ‘yes’ or ‘no’ there is no option to specify which organs you want to donate. You can only tick ‘yes’ or ‘no’ there is no option to specify which organs you want to donate. $32 to change your licence $32 to change your licence There is no prior information on it There is no prior information on it donor Urban myths Urban myths

It is not legally binding It is not legally binding Your driving licence is not checked in the event of death Your driving licence is not checked in the event of death Your family decide Your family decide If there is no family to ask you will not become a donor (Even if you have donor on your licence) If there is no family to ask you will not become a donor (Even if you have donor on your licence) donor

Other problems There are no public awareness campaigns There are no public awareness campaigns “Why would we bother targeting 3 million people a year just for another 30 decisions?” Colin Feek - Deputy Director of the Ministry of Health “Why would we bother targeting 3 million people a year just for another 30 decisions?” Colin Feek - Deputy Director of the Ministry of Health

The MOH maintain that public awareness campaigns will not increase the donor rate. Countries that do well say that public awareness is critical to their success. Who would we rather believe. Those at the top that say it works or us at the bottom who say it doesn’t?

Despite ‘urgent’ recommendations, several times over the years by the Health Select Committee nothing has happened. Not ‘one dollar’ has been spent by the MOH on public awareness in the past 7 years. In contrast, Romania recently announced that they would be spending NZ equivalent of $200,000 pa on public campaigns…

Other problems There are only 48 ICU beds pmp There are only 48 ICU beds pmp France has 378 ICU beds pmp USA has 305 ICU beds pmp France has 378 ICU beds pmp USA has 305 ICU beds pmp Organ donors only come from ICU’s Organ donors only come from ICU’s

Other problems "We actively control admissions and restrict admissions where there is no possibility of recovery." Dr. Peter Hicks ICU doctor and Chair of ODNZ Advisory Committee

International trend International trend Falling road toll Falling road toll

International trend? The United Kingdom, Austria, Belgium, Germany, Luxembourg, Slovenia, Sweden, Finland and the Netherlands have reported an increase in organ donors in Canada announced a “New record for organ donation in Ontario.” in 2006 In the US, 35 states reported an increase, Sacramento reported a 33% increase, New York up 22%, Tennessee up 20%. Arizona up 52% North Carolina reported that "donor numbers are almost doubling annually.“ In Maryland, 2006 presented a record year of organ and tissue donations through the Living Legacy Foundation

Falling road toll?

Why ‘No Veto’ Bill? Audit of organ donors 104 people were potential donors (i.e. brain death in ICU) Only 38 out of the 104 became donors 31 families refused consent Doctors did not ask 35 families

Why ‘No Veto’ Bill? Audit of organ donors 45%/50% of families say ‘no’ to donation As driving licenses are not checked we do not know how many were intended donors Surveys show 80% - 91% of New Zealander’s want their wishes to be legally binding

Dr. Jackie Blue MP Private Members Bill Would establish a voluntary ‘opt on’ legally binding register Would be able to register from age 16 Register as a donor Register as ‘not’ a donor ‘Defer decision to my family’

Jackie Blue Bill You would be able to specify organs Would be free to register and change mind Would be easy to register via internet Would provide for continuous public awareness

Government Bill “The bill does not have a stated aim of increasing organ and tissue donation rates” Stephen McKernan - Director General MOH

Government Bill Families are now able to ‘veto’ your wishes on the grounds of: “Cultural, Spiritual, Distress”

The Organ Donor Service Position? In 2003 there were 2 staff. There were 40 organ donors that year. They told the Select Committee if they had more money and more staff they could improve the organ donor rate by up to 15%

The Organ Donor Service Position? In 2006 their budget had tripled Now there are 4 staff, a Medical Director and an ‘Advisory Board’ of 13 people Organ donors dropped from 40 to 25

Advisory Board Dr. Peter Hicks – Chair of the Advisory Board 'The fact that other people may die does not validate efforts to increase the number of donations.” Advise on how to increase donor rate

Advisory Board Dr. Peter Hicks – Chair of the Advisory Board "There are a number of situations where organ donation may be unacceptable to the family." such as when "a person has assaulted their partner who is now brain dead."

Organ Donor Service Are opposed to a register Are opposed to wishes being legally binding “Registering a wish to donate organs or tissues following death can only be considered as an intent or an indication of a wish to donate. Informed consent is obtained from the family following death.”

Organ Donor Service Are opposed to a register saying they have a “low take up rate.” US State % of population signed on donor register Wyoming85% Utah67% Colorado60% Idaho57% Washington State51% Illinois47% Wisconsin Counties46% North Dakota41% South Dakota41% Minnesota36%

Annette King (Previous Minister of Health) Cartoon

Jonah Lomu Cartoon

About LifeSharers > If you or a loved one ever need an organ for a transplant, you may die before you get one. > You can improve your odds by joining LifeSharers. Membership is free. > LifeSharers is a non-profit voluntary network of organ donors. Members agree to donate their organs when they die.

About LifeSharers > Members give fellow members first access to their organs. Non-members can have them if no member who is a suitable match wants them. > As a member, you will have access to organs that otherwise may not be available to you. > Every time somebody joins LifeSharers, the chance you will die waiting for an organ goes down.

Why You Should Join LifeSharers > NZ has the lowest organ donor rate in the developed world. > In 2006 there were just 25 organ donors in NZ. > In the past 6 years the transplant waiting list has doubled. > There are presently around 2000 people on dialysis. > In 2006 there were 330 deaths of people on dialysis.

Why You Should Join LifeSharers > In 2006 there were 433 people on the waiting list for a kidney. > In 2006 there were only 41 kidney transplants. (Not including live donors.) > In 2006 the number of transplants performed was at its lowest level in 14 years. > In 2006 the number of ‘new’ patients entering renal failure programs was 484. A rate of 117 people per million of population.

How LifeSharers Works > LifeSharers members give fellow members preferred access to their organs. > If an organ from a recently deceased LifeSharers member becomes available, it must be offered to LifeSharers members first. > If no LifeSharers member needs the organ, or if no LifeSharers member is a suitable match for it, then the organ can be offered to non-members.

How LifeSharers Works > LifeSharers does not match organs and recipients. > LifeSharers does not interfere with the rules doctors use to rank organ recipients. Our members only ask that their donation be directed to the highest-ranking member on the transplant waiting list.

How LifeSharers Works > Many of the transplanted organs go to recipients who are not prepared to be donors themselves, while many of those who are willing to be donors go without. > Justice would connect the business of organ procurement with the matter of organ distribution. Access to organs for transplantation should be linked to the willingness to be an organ donor. The right to receive a donated organ should be tied to the duty to offer to donate organs.

How LifeSharers Works > People are motivated more by self-interest than by altruism. To increase organ donation, the incentive needs to be aligned with self-interests. > Agreeing to 'give the gift of life' would no longer be an act of pure altruism; rather it would be an insurance policy. Even the most selfish of individuals would be willing to become donors if it gave them greater access to the hearts or livers that might save their lives.

How LifeSharers Works > The benefits of registering under a priority incentive program clearly exceed the costs. Even after registering, it is extremely unlikely that a registrant will donate organs because it is rare to die with organs medically eligible for transplantation. > Potential donors can make the trade off between the very remote possibility of becoming an organ donor and the not-quite-so remote possibility of needing an organ.

How LifeSharers Works > Opponents of the scheme may say it’s not fair. In fact, it makes the organ allocation system fairer. > What isn’t fair is giving an organ to someone who won’t donate their own, when there is a registered organ donor who needs it. > It’s like awarding the lotto jackpot to someone who didn’t buy a ticket.

Frequently Asked Questions Q – Why should organ donors get preferred access? A – Because if donors get preferred access, more people will become donors. This will save lives. A – Because it corrects an inequity in the distribution system – people who haven’t agreed to donate their own organs get many of the organs that become available.

Frequently Asked Questions Q – How do you stop people from joining only after they know they need an organ? A – There is a 180-day waiting period before a member gets preferred access. This encourages people to join LifeSharers while they’re still healthy. Q – Is LifeSharers legal? A – Yes. Directed Donation is legal in New Zealand.

Frequently Asked Questions Q – If I join LifeSharers, can I still donate my organs to a family member? A – Yes. LifeSharers members specifically reserve this right. Q – How much does it cost to join LifeSharers? A – Nothing. Membership is free. Q – How do I sign up? A – Go to or fill out the member enrollment form on our brochure and post it to us.

LifeSharers > Our mission – to end the shortage of donated organs for transplant operations in NZ. > Our plan – we provide an incentive to donate, by directing the donation of our organs to others who have promised to donate theirs.

Organ Donor Service Reaction? > 1 May LifeSharers launched > 23 May – Meeting of the Organ Donor Advisory Board > There was consensus that a policy should be developed for ODNZ (Organ Donation New Zealand) which would include the following wording:

Organ Donor Service Reaction? > "In general directed donation of deceased organ donors is not permitted on the grounds that is contravenes principles of fairness and may give the impression of prejudice in organ allocation. However, in the rare event that a deceased donor had a prior close personal relationship (because the person was a family member or friend) with a patient on an organ recipient waiting list, it is permissible to allow the family to direct donation of the appropriate organ to that named recipient."

Funeral Costs? > Pay the funeral costs of donors?

Funeral Costs? > Paying for ‘whole’ body donations – all organs has led to a surplus of bodies at Otago University. Whilst not paying for ‘parts’ of bodies has led to a shortage of organs for transplant… > They do not pay ‘funeral costs’ but ‘disposal costs’ > “Nor does the payment for the disposal of donated bodies constitute an incentive or payment for donation.”

For More Information > Internet – > – > Phone – (03)