December 1, 2025 • 13 mins
Organ donor campaigner Andy Tookey chats to Matt and Tyler about common myths surrounding organ donation, and how to improve donor rates in New Zealand.
"There needs to be more public awareness about it to encourage families to discuss the issues," Tookey said.
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Speaker 1 (00:09):
You're listening to a podcast from News Talks'd be follow
this and our Wide Ranger podcasts now on iHeartRadio.
Speaker 2 (00:16):
Andy Tuki. He set up Live Sharers and also Give
Life Organization to help increase New Zealand's organ donation rate,
which remains among the lowest in the western world. He
spent two decades campaigning to increase that donation rate and
currently there's around four to five hundred people waiting on
a compatible organ. Andy Tukey joins us on the line. Now, Andy,
(00:38):
very good afternoon to you.
Speaker 3 (00:40):
Hello, thanks yep, Andy.
Speaker 4 (00:42):
How often do potential organ donations fall over because you know,
families aren't sure of their loved one's wishes.
Speaker 3 (00:51):
Well, the last time I checked, about sixty percent of
people of families say no to organ donation. Wow. An
awful that's an awful lot of people. Yeah, and there's
been many reasons for that, but yes, that's one of
the areas of trying to work on was trying to
(01:14):
get that rate down because when six out of ten
families are saying no the donation, they're losing a lot
of lives unnecessarily.
Speaker 4 (01:23):
So if you like me, I have on my license,
then I'm a donor, and I kind of thought that
just meant I was a donor then, but you know,
obviously I've looked into it more now and found out
that my family would to get involved. So if you
have click donor, is it then a good idea to
go around and talk to your family members and the
people that decide and actually describe what you want to happen,
(01:46):
because because it's very easy to click as donor, but
you might not have thought about it much. But is
that something that could help?
Speaker 3 (01:53):
Well, this is actually one of the first issues I discovered.
I mean, my history on this, why I started this
was when my daughter was born. They discovered she had
a liver disease and they said she would die by
age one if she didn't get a new liver. And
(02:13):
she was in hospital a long time, and we talked
to families whose children would die because they had cancer
and stuff like that. But I thought, my daughter, there's
a cure, one hundred percent cure, and it's been very
incremated every day, and why the organ donorates so low?
So then I started investigating Official Information Act requests and
(02:37):
I'll tell you what, over the years, I've opened some
huge cans of worms on it the failings of the system.
But you know, one of the things which the public
did not know at the time, which I think through
my constant media appearances, the public mostly known these days
that yes, put me on your driving license means absolutely
(02:58):
nothing because they will not even check the license if
you're involved, say in a car crash, right because it's
not deemed to be consent. It's not because you could
have ticked that box years ago, so it's not consent.
(03:18):
Is really an ongoing thing. What I tried to do
is to get them to change it so it's not
on a driving license as such, but so you could
do it online. So you could go online and you
could change your wishes as often as you like. It
costs you nothing, and then it would be updated, you know,
(03:39):
in the health system, they would know automatically what your
wishes are. Because if you change your mind on your
driving license and you've got to pay forty odd dollars
to get it changed, people aren't going to do that.
And so that was the main issue I believe was
public awareness. The public needs to know these things. There
is another thing why I say six out of ten
(04:01):
families say no, is because you know ten family members
could be around your deathbed and nine of them agree
to organ donation. If one person says no, that one
no trumps all of nine yearses.
Speaker 4 (04:16):
Wow. Wow, I did not know that. That is interesting.
So when you say when you say having on your
license means nothing, when is the conversation brought up for
family members to have their say on it? Is that
brought up as a standard conversation, you know, by medical professionals,
or is it brought up if your status is yes?
(04:38):
Or how does that work?
Speaker 1 (04:40):
Yeah?
Speaker 3 (04:41):
What they prefer to do. Yeah, But the time it's
brought up organ donation is when that person is basically
brain dead. Now, this is why a lot of people,
well a lot of family would say no to organ donation.
For example, you've just been told your son has died,
(05:05):
but by the way, can we have his organs? That's
not the best time to be asking, you know, it
needs to be done way ahead. This is why it
needs to be more public awareness about it to encourage
families to discuss the issues.
Speaker 2 (05:21):
This is good information. Andy. Now may mentioned this earlier
and crreick me if I'm wrong, but I think this
was something you campaigned on, so it was register that
if you are a donor yourself and at some point
you need an organ you would go to the top
of the list.
Speaker 3 (05:38):
Yes, I did. That was part of my because there's
the two types of organ donation, you had to change
a lot in that system. But I also wanted to
change the live donors situation because the live donors back
at the time say, for example, your sister needed a
(05:58):
kidney and you were happy to donate one, but you
still got to pay your mortgage, your bills and everything,
and you don't get any pay All you were getting
was you have to go to Winds and beg for
some benefit money, and so you'd have to say no,
I can't afford to do this financially. So eventually I
got through Parliament well, with the help of MPs, I
(06:20):
got through that. They now get one hundred percent compensation
which helps the financial side of things. And I also
I did campaign, but I didn't get on if you
donate a kidney, then you should be moved to the
top of the waiting list should you ever require one.
Speaker 2 (06:40):
It would have been a good way to raise the
donation levels. You know that makes sense to me, right, Yeah,
it's a word wind that if you, out of the
goodness of your heart, decide when someone needs a kidney
to donate it and you get into trouble, then you're
right at the top of the list. How's the list
worked out now, Andy.
Speaker 3 (06:57):
Well, it's on a combination of things. You know, it's
on time at the time and need an urgency really
and what they've got compatible I suppose you know it's
I think each case would be different. I think they've
got a lot of vorisms that they use, but specifically
I don't know what they are. These days.
Speaker 2 (07:17):
We are speaking to Andy Tuky. He set up Life
Sharers and also Give Life organization. He's been campaigning or
was campaigning for the for twenty years to try and
up our donation rates and he's back with us. Andy,
think you again for your time.
Speaker 3 (07:31):
That's great help problems?
Speaker 4 (07:32):
Yea, hey Andy, what what do you think the biggest
misunderstandings are around donations in this in New Zealand. The
myths and misunderstandings.
Speaker 3 (07:43):
Well, there's a lot of myths, I guess both misunderstandings.
But a lot of people won't put a donor on
their license or they said I don't want to be
a donor because they've got a medical condition, so they
don't think they'd be suitable, right, and everybody should put
(08:06):
it on there because the doctors would decide the time.
I mean because just because you've got to I don't know,
in growing toenails doesn't mean you can't donate a kidney.
And so a lot of people think they don't. They
think that like smokers think they can't be donors, but
they can be. So yeah, so they should just put
(08:27):
donor and then they would check you at the time
and they would get superb you are if you're not,
you're not, So yeah, the best way to go and
is you know a lot of myths that you know,
people believe that you're you're not actually dead when you
donate your organs. You are, you're you know your you're
brain dead, You're not in a coma. You're definitely dead dead.
(08:50):
So so you get all these things and most of
you get it off. I don't know, bad TV programs
or horror movies and stuff, but never any way to
correct it. This is why there needs to be more awareness.
It needs to be more from the government really to
push us in other countries. You say there's TV commercials
(09:11):
all the time. I remember back in the UK they
would promote it on TV commercials constantly, you know, as
they did with putting seat belts on and things like that.
It was quite common and so you know, get people
in that frame of mind to talk about it with
their family.
Speaker 4 (09:28):
So obviously we need to increase the donation rate. Do
you think they're advertising or is there more legal changes
or the way donations dealt with clinically that would increase
New Zealand's organization organ donation?
Speaker 3 (09:43):
Right?
Speaker 4 (09:44):
What do you think the biggest improvements we could make
to make that happen?
Speaker 3 (09:48):
Yeah? I think my main one is the public awareness basically,
stop that six in ten people saying no. It should
be which I pushed for as well. It should be
mandatory training for doctors in IC you I see, you
to have training in organ donation and how to approach families.
(10:11):
They have a thing called linked nurses that do that now,
so they are improving in some areas. But this is
legal wise. Well, I did try and push for the
opt out system, you know, where you're presumed to be
an organ downer as as opposed to the opting in
now you'd have to kind of opt out, right, Yes,
(10:34):
as all of the UK does now many country does.
And yeah, they're still a lot keen on doing that here.
And in fact the Select Committee, which I appeared at
many times, the organ donor doctors said if we did,
if you did that, we wouldn't take the organs anyway.
Speaker 2 (10:53):
So don't know why.
Speaker 3 (10:56):
They justus very against it.
Speaker 4 (11:00):
I mean they're not saving lives.
Speaker 3 (11:03):
No, Well, certainly the ICU doctors I was dealing with
at the time with totally upfront blackmail the Select Committee,
they just said you can change the law and we
will not follow it.
Speaker 2 (11:17):
Very odd. So for something like you know that you
cannot doubt if for that is it is so personal
to you, that's fine, But to have it as a
not done by default, I just don't see why there'd
be opposition.
Speaker 4 (11:30):
Yeah, and and how has it worked out in the
countries where it has been introduced in recent years.
Speaker 3 (11:36):
Well, yeah, you do get some people who are against
that sort of compulsion and they opt out, but overall
much better rates yea.
Speaker 2 (11:47):
And yeah, no, it's been really great to chat with
you on this end. Just the final question you mentioned
what spooned you on this journey was your daughter Katie.
How did that that journey go for her.
Speaker 3 (11:59):
Okay, Well, when I said she would need one live
a new liver, it's not like the kidney. We've got
two of them. She would need a new liver by
age one. Well, she did not get her transplant. And
believe it or not, she's now twenty three and she
still hasn't had her transplant. Wow, she's in good health.
(12:23):
She is monitored regularly. And I also discover she is
now the oldest living person in New Zealand with that
liver disease who hasn't had a transplant. So of course
I'm pretty happy.
Speaker 2 (12:38):
Yeah, I mean incredible that she's managed to fire the odds.
So she's still on the wait list, Andy is there?
Speaker 3 (12:47):
Well they know. This is how they mess the figures
up a bit, is they don't put you on the
waiting list for an augan donation until you're desperate for it,
and then usually you're too by that stage, you're too
sick to receive an organ donation. So that's why many
people die waiting. Yeah.
Speaker 2 (13:07):
Andy, think you've very much for your time this afternoon
and having a chat with us, and and well done
for the changes you have made. But it seems there's
still some way to go.
Speaker 4 (13:15):
Yeah, thanks so much for the work you've done over
the years on the on the in this space, Andy,
it's fantastic.
Speaker 3 (13:19):
Yeah, great. Thank you.
Speaker 2 (13:20):
That is Andy Tuk who's been a campaigner to raise
our donation rates for a couple of decades.
Speaker 1 (13:26):
For more from News Talks at b listen live on
air or online, and keep our shows with you wherever
you go with our podcasts on iHeartRadio.
You're listening to a podcast from News Talks'd be follow
this and our Wide Ranger podcasts now on iHeartRadio.
Speaker 2 (00:16):
Andy Tuki. He set up Live Sharers and also Give
Life Organization to help increase New Zealand's organ donation rate,
which remains among the lowest in the western world. He
spent two decades campaigning to increase that donation rate and
currently there's around four to five hundred people waiting on
a compatible organ. Andy Tukey joins us on the line. Now, Andy,
(00:38):
very good afternoon to you.
Speaker 3 (00:40):
Hello, thanks yep, Andy.
Speaker 4 (00:42):
How often do potential organ donations fall over because you know,
families aren't sure of their loved one's wishes.
Speaker 3 (00:51):
Well, the last time I checked, about sixty percent of
people of families say no to organ donation. Wow. An
awful that's an awful lot of people. Yeah, and there's
been many reasons for that, but yes, that's one of
the areas of trying to work on was trying to
(01:14):
get that rate down because when six out of ten
families are saying no the donation, they're losing a lot
of lives unnecessarily.
Speaker 4 (01:23):
So if you like me, I have on my license,
then I'm a donor, and I kind of thought that
just meant I was a donor then, but you know,
obviously I've looked into it more now and found out
that my family would to get involved. So if you
have click donor, is it then a good idea to
go around and talk to your family members and the
people that decide and actually describe what you want to happen,
(01:46):
because because it's very easy to click as donor, but
you might not have thought about it much. But is
that something that could help?
Speaker 3 (01:53):
Well, this is actually one of the first issues I discovered.
I mean, my history on this, why I started this
was when my daughter was born. They discovered she had
a liver disease and they said she would die by
age one if she didn't get a new liver. And
(02:13):
she was in hospital a long time, and we talked
to families whose children would die because they had cancer
and stuff like that. But I thought, my daughter, there's
a cure, one hundred percent cure, and it's been very
incremated every day, and why the organ donorates so low?
So then I started investigating Official Information Act requests and
(02:37):
I'll tell you what, over the years, I've opened some
huge cans of worms on it the failings of the system.
But you know, one of the things which the public
did not know at the time, which I think through
my constant media appearances, the public mostly known these days
that yes, put me on your driving license means absolutely
(02:58):
nothing because they will not even check the license if
you're involved, say in a car crash, right because it's
not deemed to be consent. It's not because you could
have ticked that box years ago, so it's not consent.
(03:18):
Is really an ongoing thing. What I tried to do
is to get them to change it so it's not
on a driving license as such, but so you could
do it online. So you could go online and you
could change your wishes as often as you like. It
costs you nothing, and then it would be updated, you know,
(03:39):
in the health system, they would know automatically what your
wishes are. Because if you change your mind on your
driving license and you've got to pay forty odd dollars
to get it changed, people aren't going to do that.
And so that was the main issue I believe was
public awareness. The public needs to know these things. There
is another thing why I say six out of ten
(04:01):
families say no, is because you know ten family members
could be around your deathbed and nine of them agree
to organ donation. If one person says no, that one
no trumps all of nine yearses.
Speaker 4 (04:16):
Wow. Wow, I did not know that. That is interesting.
So when you say when you say having on your
license means nothing, when is the conversation brought up for
family members to have their say on it? Is that
brought up as a standard conversation, you know, by medical professionals,
or is it brought up if your status is yes?
(04:38):
Or how does that work?
Speaker 1 (04:40):
Yeah?
Speaker 3 (04:41):
What they prefer to do. Yeah, But the time it's
brought up organ donation is when that person is basically
brain dead. Now, this is why a lot of people,
well a lot of family would say no to organ donation.
For example, you've just been told your son has died,
(05:05):
but by the way, can we have his organs? That's
not the best time to be asking, you know, it
needs to be done way ahead. This is why it
needs to be more public awareness about it to encourage
families to discuss the issues.
Speaker 2 (05:21):
This is good information. Andy. Now may mentioned this earlier
and crreick me if I'm wrong, but I think this
was something you campaigned on, so it was register that
if you are a donor yourself and at some point
you need an organ you would go to the top
of the list.
Speaker 3 (05:38):
Yes, I did. That was part of my because there's
the two types of organ donation, you had to change
a lot in that system. But I also wanted to
change the live donors situation because the live donors back
at the time say, for example, your sister needed a
(05:58):
kidney and you were happy to donate one, but you
still got to pay your mortgage, your bills and everything,
and you don't get any pay All you were getting
was you have to go to Winds and beg for
some benefit money, and so you'd have to say no,
I can't afford to do this financially. So eventually I
got through Parliament well, with the help of MPs, I
(06:20):
got through that. They now get one hundred percent compensation
which helps the financial side of things. And I also
I did campaign, but I didn't get on if you
donate a kidney, then you should be moved to the
top of the waiting list should you ever require one.
Speaker 2 (06:40):
It would have been a good way to raise the
donation levels. You know that makes sense to me, right, Yeah,
it's a word wind that if you, out of the
goodness of your heart, decide when someone needs a kidney
to donate it and you get into trouble, then you're
right at the top of the list. How's the list
worked out now, Andy.
Speaker 3 (06:57):
Well, it's on a combination of things. You know, it's
on time at the time and need an urgency really
and what they've got compatible I suppose you know it's
I think each case would be different. I think they've
got a lot of vorisms that they use, but specifically
I don't know what they are. These days.
Speaker 2 (07:17):
We are speaking to Andy Tuky. He set up Life
Sharers and also Give Life organization. He's been campaigning or
was campaigning for the for twenty years to try and
up our donation rates and he's back with us. Andy,
think you again for your time.
Speaker 3 (07:31):
That's great help problems?
Speaker 4 (07:32):
Yea, hey Andy, what what do you think the biggest
misunderstandings are around donations in this in New Zealand. The
myths and misunderstandings.
Speaker 3 (07:43):
Well, there's a lot of myths, I guess both misunderstandings.
But a lot of people won't put a donor on
their license or they said I don't want to be
a donor because they've got a medical condition, so they
don't think they'd be suitable, right, and everybody should put
(08:06):
it on there because the doctors would decide the time.
I mean because just because you've got to I don't know,
in growing toenails doesn't mean you can't donate a kidney.
And so a lot of people think they don't. They
think that like smokers think they can't be donors, but
they can be. So yeah, so they should just put
(08:27):
donor and then they would check you at the time
and they would get superb you are if you're not,
you're not, So yeah, the best way to go and
is you know a lot of myths that you know,
people believe that you're you're not actually dead when you
donate your organs. You are, you're you know your you're
brain dead, You're not in a coma. You're definitely dead dead.
(08:50):
So so you get all these things and most of
you get it off. I don't know, bad TV programs
or horror movies and stuff, but never any way to
correct it. This is why there needs to be more awareness.
It needs to be more from the government really to
push us in other countries. You say there's TV commercials
(09:11):
all the time. I remember back in the UK they
would promote it on TV commercials constantly, you know, as
they did with putting seat belts on and things like that.
It was quite common and so you know, get people
in that frame of mind to talk about it with
their family.
Speaker 4 (09:28):
So obviously we need to increase the donation rate. Do
you think they're advertising or is there more legal changes
or the way donations dealt with clinically that would increase
New Zealand's organization organ donation?
Speaker 3 (09:43):
Right?
Speaker 4 (09:44):
What do you think the biggest improvements we could make
to make that happen?
Speaker 3 (09:48):
Yeah? I think my main one is the public awareness basically,
stop that six in ten people saying no. It should
be which I pushed for as well. It should be
mandatory training for doctors in IC you I see, you
to have training in organ donation and how to approach families.
(10:11):
They have a thing called linked nurses that do that now,
so they are improving in some areas. But this is
legal wise. Well, I did try and push for the
opt out system, you know, where you're presumed to be
an organ downer as as opposed to the opting in
now you'd have to kind of opt out, right, Yes,
(10:34):
as all of the UK does now many country does.
And yeah, they're still a lot keen on doing that here.
And in fact the Select Committee, which I appeared at
many times, the organ donor doctors said if we did,
if you did that, we wouldn't take the organs anyway.
Speaker 2 (10:53):
So don't know why.
Speaker 3 (10:56):
They justus very against it.
Speaker 4 (11:00):
I mean they're not saving lives.
Speaker 3 (11:03):
No, Well, certainly the ICU doctors I was dealing with
at the time with totally upfront blackmail the Select Committee,
they just said you can change the law and we
will not follow it.
Speaker 2 (11:17):
Very odd. So for something like you know that you
cannot doubt if for that is it is so personal
to you, that's fine, But to have it as a
not done by default, I just don't see why there'd
be opposition.
Speaker 4 (11:30):
Yeah, and and how has it worked out in the
countries where it has been introduced in recent years.
Speaker 3 (11:36):
Well, yeah, you do get some people who are against
that sort of compulsion and they opt out, but overall
much better rates yea.
Speaker 2 (11:47):
And yeah, no, it's been really great to chat with
you on this end. Just the final question you mentioned
what spooned you on this journey was your daughter Katie.
How did that that journey go for her.
Speaker 3 (11:59):
Okay, Well, when I said she would need one live
a new liver, it's not like the kidney. We've got
two of them. She would need a new liver by
age one. Well, she did not get her transplant. And
believe it or not, she's now twenty three and she
still hasn't had her transplant. Wow, she's in good health.
(12:23):
She is monitored regularly. And I also discover she is
now the oldest living person in New Zealand with that
liver disease who hasn't had a transplant. So of course
I'm pretty happy.
Speaker 2 (12:38):
Yeah, I mean incredible that she's managed to fire the odds.
So she's still on the wait list, Andy is there?
Speaker 3 (12:47):
Well they know. This is how they mess the figures
up a bit, is they don't put you on the
waiting list for an augan donation until you're desperate for it,
and then usually you're too by that stage, you're too
sick to receive an organ donation. So that's why many
people die waiting. Yeah.
Speaker 2 (13:07):
Andy, think you've very much for your time this afternoon
and having a chat with us, and and well done
for the changes you have made. But it seems there's
still some way to go.
Speaker 4 (13:15):
Yeah, thanks so much for the work you've done over
the years on the on the in this space, Andy,
it's fantastic.
Speaker 3 (13:19):
Yeah, great. Thank you.
Speaker 2 (13:20):
That is Andy Tuk who's been a campaigner to raise
our donation rates for a couple of decades.
Speaker 1 (13:26):
For more from News Talks at b listen live on
air or online, and keep our shows with you wherever
you go with our podcasts on iHeartRadio.
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