GiveLife NZ Campaign for an effective Organ Donation System

1. GiveLife NZ Campaign for an effective Organ Donation System

2. 2 Katie

3. 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 31 people became organ donors…

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

6. 6 • No provision for non-drivers • You can only tick ‘yes’ or ‘no’ there is no option to specify which organs you want to donate. donor • $32 to change your licence • There is no prior information on it • Urban myths

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

8. 7 Petition to Parliament Despite ‘urgent’ recommendations, several times over the years by the Health Select Committee nothing has happened.

9. Annette King(Previous Minister of Health)Cartoon

10. Jonah Lomu Cartoon

11. 11 Woman’s Weekly

12. At Select Committees • Why are there 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

13. 13 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. The ‘Nicholas Effect’

14. At Select Committee Dr. Peter Hicks Chair of the Organ Donation Advisory Committee "We actively control admissions (to ICU) and restrict admissions where there is no possibility of recovery."

15. 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."

16. 16 Advisory Board Dr. Peter Hicks – Chair of the Advisory Board Advise on how to increase donor rate “The fact that other people may die does not validate efforts to increase the number of donors.”

17. Why No Organ Donor Register? Labour promised one at the 2005 election then retracted afterwards. ‘Registers only get a 25% sign up rate.’

18. ‘Close Up’ with Mark Sainsbury(Mark – question to MOH Official)“Why did the government backtrack on their promise of a donor register?”

19. ‘Close Up’ with Mark Sainsbury David Galler (Chief Medical Officer – MOH) Replied….. “Because ‘you’ (The NZ public) are ‘not capable’ of making that decision.” (to be a donor.)

20. Falling donor numbers an International trend? The United Kingdom, Austria, Belgium, Germany, Luxembourg, Slovenia, Sweden, Finland and the Netherlands have reported an increase in organ donors last year. 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

21. Jackie Blue MP – Private Members Bill 45%/50% of families say ‘no’ to donation As driving licenses are not checked we donot know how many were intended donors Surveys show 80% - 91% of New Zealander’swant their wishes to be legally binding

22. Dr. Jackie Blue MPPrivate Members Bill Would have established 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’

23. 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

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

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

26. Where are we at? After 7 years of campaigning • Proposed Organ Donor Register biffed • 2 Petitions to Parliament • Many Select Committee recommendations • 1 Private Members Bill • 1 Government Bill

27. What has been achieved? • A Government Bill that allows more people to override your wishes than previously….. In the meantime… The transplant waiting list has Doubled in the past 6 years

28. The transplant waiting list has Doubled in the past 6 years • Approx 350 people will die this year waiting for an organ that will not arrive. • In 2006 the number of transplants performed was at its lowestlevel 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.

29. In 2004 there were 40 organ donors • The Organ Donor Service were given:- • Half a million dollars • Tripled their annual budget • Tripled their staff • Employed a Medical Director • Formed an ‘Advisory Committee’ Subsequently in 2006 the organ donor rate went down to just 25 organ donors…

30. 30 Rationing of Organs?

31. 1 May 2008 - LifeSharers launched

32. About LifeSharers • LifeSharers is a non-profit voluntary network of organ donors. (A register.) Members agree to donate their organs when they die. • Members give fellow members first access to their organs. • Non-members can have them if no member who is a suitable match wants them. • Our plan – we provide an incentive to donate, by directing the donation of our organs to others who have promised to donate theirs. www.lifesharers.org.nz

33. 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. www.lifesharers.org.nz

34. 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. www.lifesharers.org.nz

35. 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. www.lifesharers.org.nz

36. 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. www.lifesharers.org.nz

37. 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. www.lifesharers.org.nz

38. 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. www.lifesharers.org.nz

39. 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. www.lifesharers.org.nz

40. Organ Donor Service Reaction? • 1 May 2008 - 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: www.lifesharers.org.nz

41. 41 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." www.lifesharers.org.nz

42. Funeral Costs? • Pay the funeral costs of donors? www.lifesharers.org.nz

43. 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.” www.lifesharers.org.nz

44. For More Information • Internet – www.lifesharers.org.nz • Email – info@lifesharers.org.nz www.lifesharers.org.nz