22nd. January 2003

SUBMISSION

To the Health Committee

On the 2002/25 Petition of Andy Tookey and 4000 others that the House take action to address the organ donation shortage in New Zealand.

Introduction

1. This submission is from: Principal Petitioner - Andy Tookey

2. I wish to appear before the committee to answer any questions the committee may have on my submission.

My Submission is enclosed:

The 2002/25 Petition of Andy Tookey and 4000 others that the House take action to address the organ donation shortage in New Zealand.

Introduction

The shortage of organs for transplantation is a worldwide problem, not just a problem in New Zealand; However, other countries spend a considerable amount of time, money and effort to maximise their donor pool, whereas New Zealand falls behind in all aspects of trying to increase their donor pool. This results in New Zealand being one of the worst 'civilised’ countries in the world for the number of organ donors it has.

New Zealand has approximately 10 donors pmp (per million population) in comparison with:

 Spain -- 39 pmp 
 USA -- 26 pmp 
 Canada -- 24 pmp 
 Western Australia -- 22 pmp 
 UK -- 13 pmp 
 NZ -- 10 pmp 
 Poland -- 8 pmp 
 Greece -- 1 pmp

Last year there were only 37 organ donors (cadaver) in New Zealand and yet the waiting list for organs is around 400. Many will die due to healthy organs being buried and cremated each day from people who may well have been happy to donate their organs had they and their families been in possession of all the details.

Why is New Zealand so low on donors?

I have been running my campaign on the organ donor shortage for one year now. Prior to that, I was not aware that there was a shortage. I do not think that most people knew either. In the past year I have managed to stimulate a fair amount of media exposure as to the shortage, which may help.
Our website (www.givelife.org.nz) has had 68,000 'hits’ to date which again may help raise awareness.

I have done extensive research as to the main reasons why our donor rates are so low. They are due to mainly:

 Absolutely nil advertising or public education on the subject
 Doctor’s missing/ignoring and failing to ask potential donor families
 Families of donors overriding the wishes of the donor

Why is Spain so high?

New Zealand has an 'opt in’ system, where people decide to be a donor. In Spain and other European countries you are presumed to be a donor unless you specify otherwise. There are arguments for and against each system.
(See attached Appendix A.)
I am not advocating that New Zealand go for the 'opt out’ system, but I feel it needs to be included for committee members to be aware of other systems around the world. Likewise, other countries like the UK and USA have a 'donor card’ system. The USA are considering putting more 'legal’ weight on these cards (Appendix B) The Donor Co-ordinators and transplant surgeons do not believe either system is appropriate for New Zealand, and I respect their reasons for believing so.

Why then has Canada got double the amount of donors to NZ?

Their system is an 'opt in’ like ours. However not only do they promote organ donation in a big positive way, it is also taught as part of the health programme in schools (to remove misconceptions, to promote the positive aspects of giving 'the gift of life’) and it is included in the driver training programme.

The 'present’ NZ system

In New Zealand the only way to indicate if you wish to be an organ donor is to tick the yes’ or no’ box on your driving licence. This in itself has problems, and though maybe more appropriate for the Transport committee to discuss is relevant in the overall picture of organ donation, particularly as it shows an underlying apathy which is prevalent in many areas of this subject.

When applying for your licence at an LTSA centre, there is no prior information on organ donation, no pamphlets, no posters on the wall, just tick the box 'yes’ or 'no’.

There are some problems with this system:

 As there is no prior information, there is no 'incentive’ to tick 'yes’
 There is no option (as there is in other countries) to specify which organs you wish to donate. I have spoken to many people who ticked 'no’ because they were happy for all their organs to be used, except for their eyes, as the question was a straight 'all or nothing’ they declined.
 Most people think they 'are’ a donor if it is on their driving licence, they do not realise that even distant relations can object to them being a donor. A recent example of this was during a conversation with the Hon. Richard Prebble who said to me "I’m a donor, look I’ve got it on my licence". Most people are horrified when I point out to them that families can (and do) override their wishes.
 What about non-drivers and those under the driving age, how do they indicate their wish to be a donor? As a teenager in the UK I carried a donor card countersigned by my parents. This does not make it a legally binding document (being underage) but it did let everyone know 'my’ wishes. Which as far as parents are concerned would make the decision as to whether to donate or not easier if they knew their child’s wishes.

 If you wish to change your option on your driving licence it will cost you $31.10
 Only 42% of driver have ticked 'yes’ on their licence

How many people are liable to go out and pay to have their drivers licence changed?
The system is too cumbersome. I ticked 'no’ on my driving licence a few years ago, I am not sure why, probably because I had no knowledge about it and some mis-conceptions. Due to my own unique circumstances last year, I decided that I should change it to a 'yes’ on my licence. Off I went to the LTSA, where incidentally I could still not find any information on organ donation, to stand in a queue for some time, to be told to fill in forms, have a new photo taken and pay $31.10!
Now, due to my circumstances I was prepared to do that, but are Mr & Mrs Joe Public?

If we want more organ donors we have to make it easier for them:

To draw a parallel, if the Salvation Army (or other charity) were to stop doing street collections, door collections and postal/phone requests, and instead informed everybody that from now on if they want to make a donation they have to drive to a Salvation Army branch office between 9am-5pm, find somewhere to park, feed a parking meter and stand in a line for 15 minutes to offer their money. How much do you think their donations would suffer?
This is what we expect potential organ donors to do.

The LTSA

The LTSA do not seem to want the job of listing donors. There is no publicity at their centres on it. No posters, no pamphlets, nothing. Something that is deemed important enough to warrant space on the driving licence, but not important enough to provide information on it, more importantly 'prior’ information, it is not really good enough to only have pamphlets available at the time, as people often pop in to do their licence during a lunch break, consideration of being an organ donor cannot be properly done whilst people are on a lunch break!
I also note that there is no mention of it on the LTSA website, even though I pointed this out to the Director of the LTSA a year ago.
I asked the Director of the LTSA (David Wright) why there was no publicity on organ donation. His reply is enclosed in Appendix C. He also mentions in that letter that some people prefer to put their wishes in their wills. The problem with this is that your will is usually read well after you are buried or cremated!

Even if there is no legal obligation on the part of the LTSA to do anything with regards to organ donation, the fact is they still administer the system and could show a little more enthusiasm in getting the message across. There are many television commercials on drink driving, seatbelts, speeding, smoking, etc.etc. Why not some on organ donation?

Ministry of Health education on organ donation

Where is it?
The Ministry of Health advise me that organ donation pamphlets were’ sent to doctor’s surgeries to be displayed. So far I have surveyed 130 practices, not one have any. I have asked doctor’s why? I am told that they may have been sent some a long time ago. there are lots of pamphlets at surgeries for all ailments from A-Z sponsored by the drug companies, but none on organ donation sponsored by the Ministry of Health.

As part of my own campaign, I arranged with initially around 30 doctor’s surgeries to drop off to them our own promotional material on organ donation, I also thought it would be a good idea whilst I was at the surgeries to also drop off fresh supplies of the official’ pamphlet produced by the Transplant Coordination Office at Greenlane.
I contacted the coordination office to request pamphlets, this was several months ago, I am still awaiting a reply, let alone the pamphlets. (This is not isolated; I have been contacted by other people who tell me that all they get is an answerphone and have still yet to get a reply to their messages)

I believe that there should be a large and continued public awareness campaign to encourage more people to be donors. There is no dispute from anyone involved with organ donation that the best way is for people to discuss their wishes with their families. Unfortunately, most people do not discuss this taboo’ subject. We must help facilitate that discussion by putting the information out there. Again, this is a problem with the current driving licence, you can tick either box and your next of kin will not know.

There needs to be a very intense public awareness campaign to redress the balance of the years of neglect. In the first instance, I personally would like to see an information brochure sent to every household in the country, perhaps with voting papers, as they have recently done in one part of the UK?
.
Even box loads of information packs could be sent to every secondary school to distribute to 4th, 5th and 6th. Formers at assemblies? (Our future drivers.)

In Canada, it is part of the Health and Physical Education Curriculum in schools.  And information packs with videos are readily available for people to do talks at schools and other institutions etc. (and they have a good donation rate)

Once the system has been changed to make it easier to become a donor, and then the public awareness campaign has begun, the momentum must continue with success stories and feel good stories’ as a result of transplants.

 Professor Stephen Munn, (Director of the NZ Liver Transplant Unit) in a recent television interview believes that using sports and television personalities in advertising campaigns would certainly help, as opposed to just general advertising. In the USA, the basketball personality Michael Jordan said in an interview that organ donation was a good thing, and suddenly the donor levels shot up (particularly in the African-American community.)

Other countries spend millions on television/billboard advertising to encourage more donors. Yet I still have to see any advertising here.

I have been lucky enough to enlist the support of film director Peter Jackson, but unless we make it easier for people to become donors it will all be in vain.

In a recent letter to myself, and others, Minister of Health, Annette King contradicts the views of others in the medical/transplantation profession by saying "Merely increasing the numbers of people who indicate they wish to be a donor or even give informed consent to be a donor will not solve the problem"

In more than one letter to myself the Minister says "it takes  time to change people’s attitudes" Well, my thinking is that nobody’s attitudes are going to be changed if we do nothing? Attitudes will only change with education and information.I am not asking the government to do anything new’ or special’ by running a public awareness campaign, I am asking them to do what they have neglected to do from the beginning. There are other factors that mean not only should there be intensive advertising/ public education programme, but it must be increased over a period of time for the following reasons.

There are many myths and misconceptions about organ donation and transplants, mostly gained from TV shows’ and urban myths,’ as this is currently the only’ place that people are getting their information from on organ donation/transplantation who can blame them?

The Greenlane babies’ hearts scandal has put further distrust in the medical profession when it comes to organs. We must do some massive damage limitation and reversal’ by promoting the good that transplants can do.
The Greenlane scandal may put us further down the organ donation scale, an effect that we may not see yet from future drivers. (Which may well push us into the third world list)
The number of people needing a liver transplant will double over the next decade, requiring more donors due the expected doubling of end stage liver disease from chronic hepatitis C. (Currently there 25,000 New Zealanders with hepatitis C, and 50,000 with chronic hepatitis B.)
 Conservative assumptions predict that at least 40 people a year will need a liver transplant alone. Staying on the subject of livers alone and excluding the need for other organs, since 1998 the NZ Liver Transplant Unit waiting times have doubled and the waiting list mortality rate is now 32% - in addition, 14% of patients have now been removed from the waiting list as they are now too advanced in disease to be transplanted.

In a letter to myself from the Deputy Director-General of the Ministry of Health (Colin Feek) he says, "The Ministry is not in a position to fund an information campaign"

Though it has been widely reported that it costs the taxpayer $15 million a year to treat Kidney patients alone, Liver  patients can cost $230,000 a year each in treatment also.

Dr. Grant Pidgeon (Renal Physician at Wellington Hospital) said in a recent press statement that dialysis costs $50,000 annually per patient, the cost of a transplant is a one off’ $70,000. Dr. Pidgeon goes on to say, " waiting lists could be cut by promoting organ donation and hiring dedicated intensive care unit staff to approach the families of brain-dead patients. At the moment, it’s an ambulance at the bottom of a cliff. More has to be done and the funding has to come from central government."

Professor Stephen Munn (Director of the Liver Transplant Unit) in the same interview said. "Even if the Ministry targeted a 20% increase in organ donation, they would save several million dollars. There are considerable cost benefits."

The Minister of Health advises me that she is "not prepared to commit potentially significant resources in an ad hoc fashion."  Judging by the experts’ opinions these would not be an ad hoc fashion.

Public Opinion

Just for information, last June, Massey University ran a Public Opinion Poll on Health Services. The respondents ranked the 16 services in order of importance. They are:

1. Treatments for children with life threatening illnesses (e.g. leukaemia)
2. High-tech procedures that treat life threatening conditions (e.g. transplants)
3. Intensive care for premature babies of very low birth weight
4. Surgery to help people with disabilities to carry out everyday tasks (e.g. hip replacements
5. Mental health services
6. Preventative services (e.g. immunisation)
7. Special care and pain relief for people who are dying
8. Therapy to help people with disabilities to carry out everyday tasks (e.g. speech therapy, physiotherapy)
9. Community services or care at home (e.g. home help)
10. Medical research for new treatments
11. Long-stay care (e.g. hospitals and nursing homes for older people)
12. Health education services (e.g. encouraging healthy lifestyles)
13. Family planning services (e.g. contraception)
14. Complementary or alternative medicine (e.g. acupuncture)
15. Treatment for infertility
16. Cosmetic surgery (e.g. tattoo removal)

As can be noted by the poll, the general public put transplants at number two in priority in health services.

Funding

As already stated, money would be saved from the $15 million annual cost by doing more transplants (not including the lives saved and the quality of life restored to many - one organ donor can save the life of, and improve the quality of life of up to 10 people.)

In reply to a Parliamentary written question as to what was being done to increase the number of organ donors, the Minister of Health replied:  "The National Transplant Donor Co-ordination Office is funded to provide education on organ donation for health professionals and to increase public awareness."

Several people involved inform me that the Transplant Donor Co-ordinators are scandalously under funded and cannot devote the resources needed to do the job properly. I am told that we should compare the funding with any’ Australian state to see the difference. As I appear to be off the Ministry of Health’s Christmas card list, I have been unable to get any information off them directly.

It is interesting to note that the Donor Co-ordinators are funded by Auckland District Health Board, (which has been ordered to cut $85 million from its annual expenditure). Though funded only by the Auckland DHB the Donor Co-ordinators are expected to provide a national service.
I am also informed that people are suspicious that they give priority to Aucklanders, though not true, they need to be independent to ward off any such suspicions.

Donor Co-ordinators

Whilst on the subject of the Donor Co-ordinators (Janice Langlands being the Manager) they are very highly regarded in the profession for the work that they do in difficult circumstances. Their time is spent doing what they do best - donor co-ordination. I suggest that to help with the organ donation 'promotion’ side of things that a PR or media relations person be attached to the unit to look after the advertising/education and media side. (As do other countries)  i.e. get the positive and successful transplant stories out in the press and coordinate all other publicity’ items? This would keep the issue ?out there.’ (Appendix D reveals one of Spain’s strategies for harnessing the power of mass media)

Another suggestion is to move that office (or at least the media relations/PR persons office) out of Greenlane Hospital (perhaps to a nice cosy cottage/homely style office in Grey Lynn?)

The main reason being that Greenlane’ and organs’ don’t really go well together at the moment
Somewhere (non-clinical) that the public can pop in’ and get information on organ donation in a relaxed atmosphere is desirable.

Medical Profession

As the organ donation population come from the Intensive Care Units, this seems to be the sensible place to focus some major training and funding.

In a recent death audit, (conducted by Dr. Stephen Streat, Intensivist at Auckland Hospital) it was revealed that between April 1999 and March 2000 - 102 people who died in ICU were suitable as donors, but only 37 became donors. Out of the 102 cases, doctors had not discussed organ donation with families in 33 cases. In other cases the families refused permission, some refused even before being asked, and three were homicide victims. (The previous nationally inconsistent practice of coroner’s refusal to permit organ donation in cases of homicide should be reviewed. (In line with the recommendations made by the Law Commission) Just a change in coroner’s attitude could increase the rate of organ donation by 8%.) In the 33 cases where families were not asked (potentially that is an extra 300 lives that could have been saved or the quality of life improved for had those 33 people become donors) it appears to have been down to the doctor’s not wanting to ask’ at such a bad time.

There have been some educational workshops for medical staff in approaching families with regards to organ donation. Though I am told that they are not well attended by doctors.
In an email to myself from Dr. Stephen Streat he says "In my view, some such education should be a mandatory part of professional accreditation for such doctors."

Part funding for these workshops was provided as an ad hoc’ grant from the Ministry of Health. Further future funding is uncertain.

Solution?

In a media statement, Dr. Pigeon says that hiring dedicated intensive care staff to approach the families of brain-dead patients could cut waiting lists. Professor Munn, in the same statement said, "At present, no regime existed to monitor organ donation in intensive care units. Part-funding a nurse to promote donation in each of the units would be a significant step in the right direction"

The following is an extract from a letter I received from an MP’s Executive Secretary (who has had a kidney transplant.)
"One of the biggest factors militating against transplants is the workload in non-transplant hospitals with A&E staff, in particular, simply not having the time to see if any of their accident victims have parts suitable for transplant. This is made worse by the fact that they don’t have a transplant hospital constantly nagging them for spare parts."

It appears from worldwide research and New Zealand professional opinion that the greatest gains to improve the organ donation rates would be to have mandatory training for ICU staff, and scout’ nurses.

Live Donors

Live donors save the taxpayer heaps of money as the cost of dialysis is well in excess of the cost of a transplant. It is not uncommon for a dialysis patient to wait for four or five years for a suitable kidney. But, there is no form of state support for live donors. There is no encouragement for live donors as they will be off work for 2-3 months after the operation. Once they run out of sick and annual leave they would have to live on their savings. (If they have any.) Most people with mortgages etc cannot afford to have that much time off work with no income.

Payments for organs is a tricky area and care has to be taken that payment is only for the amount that the person would have lost through loss of wages etc. Each case would have to be assessed on it’s own merits or we could go down the slippery slope of organs for sale.’

Dialysis for livers?

As you will be aware, there are many people on dialysis machines in New Zealand. Hopefully, these machines will keep a patient alive until a suitable kidney is available for transplant. One of the unfortunate areas with liver disease is that patients die through no organ being available, only for one often to become available just days after death.

Without going into the technical descriptions, there is a machine similar to a dialysis machine in that it can keep the (liver) patient alive until a suitable donor can be found. This is known as a MARS machine. Most countries have them now. China has 60 of them!
Perhaps I shouldn’t leave you to guess how many MARS machines New Zealand has? The answer of course is zero. These machines cost Aus$25,000 and I would ask that the committee recommend that, due to the low organ donation rates here, we at least buy a few of these machines to help bridge the gap whilst efforts are being sort to gain more donors.

The Health and Disability Commissioner (Ron Paterson) informs me that a complaint by people about the non-availability of transplant services would raise possible application of Right 4(3) of the Code, which states that: Every consumer has the right to have services provided in a manner consistent with his or her needs.

Human Tissue Act 1964

There is presently a review of the Human Tissue Act 1964. Supporters of the campaign for an improved organ donation system, members of Parliament and anyone else who asks what is being done to remedy the organ donation shortage are being misled by the stereotyped’ letters emanating from the Minister of Health.

The letters say that organ donation is part of the review, leading them to believe that the system is being fixed.’
On reading the scope of the review’ I note that it is mainly concerned with what to do with body parts once they have them. Not how to get them in the first place.

This paragraph is on page two of the review:

Whilst the review will consider the factors influencing the availability of organs and tissue from the point of view of developing policy options for the future regulatory framework in this area, it is not intended that the review address service or resource allocation issues.

In a letter to myself dated 10 July 2002, Minister of Health, Annette King says of the review: The outcome of the review may result in recommendations for changes to the donor system but it is premature to speculate on that. Until this review is completed, it is not realistic for me to comment on the specific points that you raise. Nor is it appropriate for the Ministry to consider any donor awareness campaign at present.

My point is that the Minister declines to consider any donor awareness campaign though the campaign should have in fact been running for several years by now. She is right in saying they shouldn’t be considering one now, because it should have been in full flow for some years by now!

Even if under the review of the human tissue act, organ donation was being targeted, I do not comprehend why the Minister will not start an immediate public awareness campaign, as it can only help the number of donors and in no way hinders the review. In fact in the Minister’s own words, it takes  time to change people’s attitudes.  It does indeed take time; this is why some action should be taken sooner rather than later. The review could take a further year (according to my communications with the policy analyst in charge of the review) and further years after that if any action was to be taken in respect to changes to the organ donation system. Time means lives.

World Transplant Games 2005

To illustrate further the amount of apathy towards the subject of organ donation. I was informed by the American Transplant Alliance that Canada and New Zealand were bidding for the World Transplant Games’ in 2005.

In a letter from the Director of the American Transplant Alliance I was told that the Americans were hoping to have the games in Canada, but after reading about New Zealand they feel we need them more here.

On further investigation I found that New Zealand has in fact dropped out of the bidding. The Premier of London, Ontario, was very happy with New Zealand’s decision to pull out, as it will give London a $5 million dollar boost to the local economy in tourism as well as increasing Canada’s organ donation rate through the global media interest in the games (as well as showing how well people who have had transplants can do in sports.)

I asked the Minister of Sport/Tourism why we had pulled out? I was told that it was nothing to do with him, it was being organised by the Kidney Foundation. I spoke to the Director of the Kidney Foundation (Guy Johnston) who told me that the government refused to sponsor it and they were told to try and get a grant from the Lotto. When that failed, this charitable organisation could not proceed with the bid due to the lack of funds.

I believe we missed a major opportunity here, not only to promote organ donation, to help increase the rate of donors, to inject millions of dollars into the local hotels, shops and tourism industries, but also to be seen on the world stage as being proactive in what is a well publicised global event.

Conclusion

The organ donation system is bulky, outdated not user friendly and quite frankly a mess. Apathy being just as much as a problem as the other items.

The main areas to improve our system are:

Make the system easier for people to be a donor
Give them the choice of which body parts they wish to donate
Make it easier for them to change their mind
Do not charge them to change their mind!
Educate people as to the benefits of donation
Publicise the fact that we are short of donors (as the blood service does)
Educate from an earlier age, i.e. in schools, our future drivers
Promote that families should discuss their wishes with each other; this will help lower the number of families that override a person wish.
A media/public relations officer could be attached to the donor coordination office to be responsible for spreading the success stories’
Publicise constantly to remove misconceptions
Move the organ donation PR office out of Greenlane
Fund the donor co-ordinators more in line with Australian states
Mandatory training in organ donation for ICU staff
More funding for training
Employ scout’ nurses
Look into live donors out of pocket expenses
Make provision for non drivers to indicate their wishes
A national service on an Auckland (over) budget?
Make a proper’ bid to host the World Transplant Games next time around

One solution surely lies in involving the family in the decision to donate during the donors’ lifetime, rather than them argue about it after the demise of a loved one. Whilst we all probably agree on this theory, in practice it does not happen.

We must help facilitate these discussions through advertising and education.

Professor Justin Roake (Head of Surgery at Christchurch Hospital) has recently written an article for the New Zealand Medical Journal on the organ donation shortage. Entitled Gifts of life in short supply a copy is enclosed (Appendix E)

I would ask that the committee recommend an independent inquiry into the situation to work out the many complexities of the issues surrounding organ donation, which may well include studying the different systems overseas and perhaps taking the best of each of them to develop into the best of the best’ and making New Zealand a role model for other countries in this area.

Though a subject as complex as organ donation and solutions for increasing it cannot be rushed, it must be remembered that time’ is not on everybody’s side

Andy Tookey - January 2003