LifeSharers
LifeSharers Newsletter - September
Funeral costs
for organ donors?
In the last newsletter I
said that I had been trying to persuade the government to pay the costs of
organ donors’ funeral expenses. We thought it was the least they could do as
one organ donor saves the health system many thousands of dollars by getting
others off expensive machines and treatment. It would also partly acknowledge
the great contribution that the donor had made to society in the saving of
lives.
I also said that I
would like to look further into paying a contribution to the funeral costs of
LifeSharers members if they become donors.
Plans to stop LifeSharers
I
launched LifeSharers on
As we
know, there are many in NZ who will not donate their organs, but if they ever
need one, they will hop straight on the waiting list at the same priority as
those who are registered donors. That’s like awarding the Lotto Prize to
someone who didn’t buy a ticket! As long as people can jump to the front of the
list under this system there will always be a shortage.
The
organ donor rates for the first seven months of this year are the lowest this
century!
Organ Donor Advisory Committee
This
Committee (comprised of mostly those involved with organ donation) appears to
be very good on advising on how to lower the organ donor rate. In that area
they are extremely successful. The Chairman of that committee went before
Parliament’s Health Select Committee
and told them “The fact that people are
dying on the waiting list does not validate efforts to increase the organ donor
rate.” (Unless of course his child was on the waiting list.) He also came
out with a few more outrageous statements and I sat there and thought, ‘and this guy’s job is to improve the organ
donor rate?!’
At
their first meeting after the launch of LifeSharers (23 May) they decided they
didn’t like the LifeSharers idea and came up with a plan…
Here
is a copy of the minutes of their meeting in regard to this topic:
Minutes of the meeting of the Advisory
Committee to Organ Donation
(6) Directed
Donation
There was extensive discussion about directed
donation, including directed donation to specific categories of patients and to
named individuals. Stephen Munn explained the guidelines for living donation in
New Zealand US
There was consensus that a policy should be developed
for ODNZ (Organ
Donation New Zealand) which would include the following
wording:
"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."
Action: Stephen Munn to discuss with Australian Liver
Units re Urgent Listings.
Stephen Streat and Janice Langlands
to develop a policy for ODNZ with input and approval from the Advisory
Committee
So, this small group of
people has decided that their version of fairness has a much higher moral
authority than yours…Not to mention that once again they are trying to stop any
initiatives that increase the organ donor rate.
Note
that it makes an
exception on directed donation when there is a "prior close personal relationship" between the donor and
the donee. So it appears okay to contravene ‘principles of fairness and give the
impression of prejudice’ in some circumstances, but not in others?
You would be
forgiven for feeling outraged that this minority are trying to dictate to the
majority of what they can and can’t do with their own organs.
If you wish to
express your views to this committee you can email them: CLICK
HERE It may make them think twice if
they got an email from every member pointing out whose organs they belong to
and not to interfere with your legal right to decide where your organs
go to.
Associate Minister
of Health
A month after that
meeting I received a letter from the Associate Minister of Health, Mita Ririnu. Organ donation has been pushed onto his portfolio
as it isn’t important enough to be in The Health Minister’s portfolio. (Though
in just about every other country the Health Minister takes personal
responsibility for organ donation.)
If you read his
letter you will note that parts of it are a ‘copy & paste’ of the Minutes
of the Meeting of the organ donor service… So it is quite clear what has been
going on here behind the scenes. CLICK HERE
to read the bizarre letter and my reply to him. (Not so bizarre.) If you wish
to email your views to him also, then CLICK HERE.
In his letter he
says that offering to pay for funeral expenses is an ‘inducement’ so can not be
done. (Despite the fact that I have pointed out that there are exemptions
allowed under the new law.)
I also pointed out
that Schools of Anatomy pay for the funeral expenses of whole body donors and
they have a surplus of donors, we do not pay the funeral expenses of partial
donors and we have a shortage. His reply was that they don’t pay the funeral
costs but they pay for the ‘disposal costs’ of donors. And that is not an incentive.
I have replied to
him saying that in light of his revelations I will therefore offer to make a
contribution to the ‘disposal costs’
of organ donors (If they wish to use that money to go towards a funeral who am
I to stop them!) Understandably, I have had no response from him since.
I guess if it is
not an incentive to be a donor as he says, then he will not be concerned that I
‘may’ get a flood of new members when I publicly announce this?
Can you help these Researchers/TV Programmes?
Take part in a study on organ
donation and transplantation
You are invited to participate
in a study that investigates why people donate tissues and organs to other
people. We would like to talk to individuals and families who have made
decisions about donating organs and to people who are organ or tissue donation
recipients.
The research project will
involve an interview of approximately 1 to 2 hours. It will cover the sorts of
factors you consider influenced your decision to participate in the donation
process, as well as your experience of the process. Confidentiality and privacy
are guaranteed and no names will be used in the published research.
If you are interested and
willing to take part in this important research please email Dr Rhonda Shaw (rhonda.shaw@vuw.ac.nz),
or phone her on (04) 463 6134.
This research has been approved
by the Royal Society of New Zealand Marsden Fund and
the Health and Disability Multi-Region Ethics Committee (MEC/08/03/027).
CLICK HERE
for the Participant Information Detail (Microsoft Word Document)
TV Programmes
Documentary (1) I have been asked by a documentary maker if I can
find anyone who is considering going overseas to get a transplant. They would
like to do a ‘fly on the wall’ documentary following you through the transplant.
Please email info@lifesharers.org.nz if this applies to you!
Documentary (2) another programme maker is looking for participants
also. Here is part of the email sent to me:
‘… An upcoming TV show about
reuniting families or people who have been important to them. I wondered
if you might know of anyone looking to track down either an organ donor's
family or a recipient, and whether we could help them in their search. I know
this is not usually encouraged, but it does happen, and we think it would be a
human story about one family's gift to another, plus would help in awareness
about organ donation. We would want to film a reunion of the two families or
people involved….’
If
you are interested, let me know and I will pass on your details.
New Members
Needed!
Just
a reminder that for LifeSharers to be successful we need as many members as
possible!
An
easy way to let others know about LifeSharers is to go to the email section of ‘Spread the Word’ (Click here) and just enter
your friends, family or colleagues email addresses. An automated email with all
the details of LifeSharers will be sent to them without you needing to copy
& paste text.
Feel free
to email us if you have any
comments, suggestions or questions about LifeSharers or organ donation in
general.
Kind
Regards
Andy
Tookey
Director
LifeSharers NZ
Visit our organ donation
website