GiveLife NZ Campaign for an effective Organ Donation System

GiveLife NZ GiveLife NZ

Campaign for an Campaign for an effective Organ Donation effective Organ Donation

SystemSystem

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NZ has the lowest number of organ NZ has the lowest number of organ donors in the Western World.donors in the Western World.

Last year there were 29,000 deaths Last year there were 29,000 deaths in NZ.in NZ.

Out of those only 25 people became Out of those only 25 people became organ donors.organ donors.

Country Donors per million of population

Spain 35.1

Estonia 26.5

USA 21.3

Poland 14.5

UK 10.7

Australia 10

Costa Rica 10

Malta 10

Cuba 9.1

Chile 8.3

Iceland 6.8

New Zealand 6

Hong Kong 4.2

Mexico 3

Why are we so low on donors?Why are we so low on donors?

The Driving Licence The Driving Licence Problems…Problems…

donor

• No provision for non-driversNo provision for non-drivers

• You can only tick You can only tick ‘yes’‘yes’ or or ‘no’‘no’ there is no option to specify there is no option to specify which organs you want to donate.which organs you want to donate.

• $32 to change your licence$32 to change your licence

• There is no prior information on itThere is no prior information on it

donor

• Urban mythsUrban myths

• It is not legally bindingIt is not legally binding

• Your driving licence is not Your driving licence is not checked in the event of deathchecked in the event of death

• Your family decideYour family decide

• If there is no family to askIf there is no family to askyou will not become a donoryou will not become a donor(Even if you have donor on your licence)(Even if you have donor on your licence)

donor

Other problemsOther problems

• There are no public awareness campaignsThere are no public awareness campaigns

““Why would we bother targeting 3 million people Why would we bother targeting 3 million people a year just for another 30 decisions?”a year just for another 30 decisions?”

Colin Feek - Deputy Director of the Ministry of HealthColin Feek - Deputy Director of the Ministry of Health

The MOH maintain that public The MOH maintain that public awareness campaigns will awareness campaigns will not increase the donor rate.not increase the donor rate.

Countries that do well say that public awareness Countries that do well say that public awareness is critical to their success.is critical to their success.

Who would we rather believe. Those at the top Who would we rather believe. Those at the top that say it works or us at the bottom who say it that say it works or us at the bottom who say it doesn’t?doesn’t?

Despite Despite ‘urgent’‘urgent’ recommendations, several recommendations, several times over the years by the times over the years by the Health Select Committee Health Select Committee nothing has happened.nothing has happened.

Not ‘one dollar’ has been spent by the MOH on Not ‘one dollar’ has been spent by the MOH on public awareness in the past 7 years.public awareness in the past 7 years.

In contrast, Romania recently announced that In contrast, Romania recently announced that they would be spending NZ equivalent of they would be spending NZ equivalent of $200,000 pa on public campaigns…$200,000 pa on public campaigns…


• There are only 48 ICU beds pmpThere are only 48 ICU beds pmp

• France has 378 ICU beds pmpFrance has 378 ICU beds pmp USA has 305 ICU beds pmp USA has 305 ICU beds pmp

• Organ donors only come from ICU’sOrgan donors only come from ICU’s


"We actively control admissions and restrict "We actively control admissions and restrict admissions where there is no possibility of recovery."admissions where there is no possibility of recovery."

Dr. Peter Hicks ICU doctor and Chair of Dr. Peter Hicks ICU doctor and Chair of ODNZODNZ Advisory Committee Advisory Committee

• International trendInternational trend

• Falling road tollFalling road toll

International trend?International trend?The United Kingdom, Austria, Belgium, Germany, Luxembourg,Slovenia, Sweden, Finland and the Netherlands have reported an increase in organ donors in 2006.

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

Why ‘No Veto’ Bill?Why ‘No Veto’ Bill?Audit of organ donorsAudit of organ donors

104104 people were potential donorspeople were potential donors(i.e. brain death in ICU)(i.e. brain death in ICU)

Only Only 3838 out of the out of the 104104 became donors became donors

3131 families refused consent families refused consent

Doctors did not ask Doctors did not ask 3535 families families

Why ‘No Veto’ Bill?Why ‘No Veto’ Bill?Audit of organ donorsAudit of organ donors

45%/50%45%/50% of families say of families say ‘no’‘no’ to donation to donation

As driving licenses are not checked we doAs driving licenses are not checked we donot know how many were intended donorsnot know how many were intended donorsSurveys show Surveys show 80% - 91%80% - 91% of New of New Zealander’sZealander’s want their wishes to be legally want their wishes to be legally bindingbinding

Dr. Jackie Blue MPDr. Jackie Blue MPPrivate Members BillPrivate Members Bill

Would establish a voluntary Would establish a voluntary ‘opt ‘opt on’on’ legally binding register legally binding register

Would be able to register from age 16Would be able to register from age 16

Register as a donorRegister as a donor

Register as Register as ‘not’‘not’ a donor a donor

‘‘Defer decision to my family’Defer decision to my family’

Jackie Blue BillJackie Blue Bill

You would be able to specify organsYou would be able to specify organs

Would be free to register and change mindWould be free to register and change mind

Would be easy to register via internetWould be easy to register via internet

Would provide for continuous public awarenessWould provide for continuous public awareness

Government BillGovernment Bill

““The bill does not have a stated aim of The bill does not have a stated aim of increasing organ and tissue donation rates”increasing organ and tissue donation rates”

Stephen McKernan - Director General MOHStephen McKernan - Director General MOH

Government BillGovernment Bill

Families are now able to Families are now able to ‘veto’‘veto’ your wishes on your wishes onthe grounds of:the grounds of:

““Cultural, Spiritual, Distress”Cultural, Spiritual, Distress”

The Organ Donor Service Position?The Organ Donor Service Position?

In 2003 there were In 2003 there were 22 staff. staff. There were There were 4040 organ donors that year. organ donors that year.

They told the Select Committee if they had They told the Select Committee if they had more money and more staff they could more money and more staff they could improve the organ donor rate by up to improve the organ donor rate by up to 15%15%

The Organ Donor Service Position?The Organ Donor Service Position?

In 2006 their budget had In 2006 their budget had tripledtripled

Now there are Now there are 4 staff4 staff, a , a Medical DirectorMedical Director and and an an ‘Advisory Board’‘Advisory Board’ of 13 people of 13 people

Organ donors dropped from Organ donors dropped from 40 to 2540 to 25

Advisory BoardAdvisory Board

Dr. Peter Hicks – Chair of the Advisory BoardDr. Peter Hicks – Chair of the Advisory Board

'The fact that other people may die does not 'The fact that other people may die does not validate efforts to increase the number of validate efforts to increase the number of

donations.”donations.”

Advise on how to increase donor rateAdvise on how to increase donor rate

Advisory BoardAdvisory Board

Dr. Peter Hicks – Chair of the Advisory BoardDr. Peter Hicks – Chair of the Advisory Board

"There are a number of situations where organ "There are a number of situations where organ

donation may be unacceptable to the family."donation may be unacceptable to the family." such as whensuch as when "a person has assaulted their "a person has assaulted their

partner who is now brain dead."partner who is now brain dead."

Organ Donor ServiceOrgan Donor Service

Are opposed to a registerAre opposed to a register Are opposed to wishes being legally bindingAre opposed to wishes being legally binding ““Registering a wish to donate organs or Registering a wish to donate organs or tissues following death can only be considered tissues following death can only be considered as an as an intentintent or an or an indicationindication of a wish to of a wish to donate. Informed consent is obtained from the donate. Informed consent is obtained from the

family following death.”family following death.”

Organ Donor ServiceOrgan Donor ServiceAre opposed to a registerAre opposed to a register saying theysaying they have a have a ““low take up rate.”low take up rate.” US State % of population

signed on donor register

Wyoming 85%

Utah 67%

Colorado 60%

Idaho 57%

Washington State 51%

Illinois 47%

Wisconsin Counties 46%

North Dakota 41%

South Dakota 41%

Minnesota 36%

Annette KingAnnette King

(Previous Minister (Previous Minister of Health)of Health)

CartoonCartoon

Jonah Lomu CartoonJonah Lomu Cartoon

www.lifesharers.org.nz

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.



> 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.



> 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.



> 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.



> 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.



> 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.



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.



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 www.lifesharers.org.nz 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 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:


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 – www.lifesharers.org.nz

> Email – [email protected]

> Phone – (03) 338 5678

Documents

GiveLife NZ Campaign for an effective Organ Donation System