PRESS STATEMENT – KIDNEY WALES FOUNDATION
PROGRESSIVE LAW ON ORGAN DONATION
Debate on Final stages Tuesday 2 of July 2013 National Assembly For Wales
HUMAN TRANSPLANTATION (WALES) BILL
The leading campaigning charity in Wales on organ donation, Kidney Wales Foundation, has campaigned for 5 years for a change in the law on organ donation. The Charity’s vision of changing the law is being realised. The final debate will take place in the Assembly on 2 of July.
Roy J Thomas, Chief Executive of Kidney Wales said “The UK is one of the lowest donor rate countries in Europe. The new HUMAN TRANSPLANTATION (WALES) BILL is new progressive law. We are proud to have led the debate in favour of this law. “
Mr Thomas added “The Welsh Government has seen this Bill scrutinised properly and several detailed consultations have been undertaken with the Welsh public. Wales has been at the forefront of organ donation with development of the Organ Donor Register in the 1980’s to having the DVLA communicate on the issue when sending out driving licenses. This law is further progress and evidence shows it will increase donation rates.”
•All Welsh residents will be able to register their personal wishes regarding organ donation.
•As now, you may register as a donor or Opt-in.
•You may also register as a non-donor or Opt-out, this is new.
•But if you do not opt-in, or opt-out, i.e. if you do nothing, you will have deemed to consent to organ donation.
Deemed consent donation will not go ahead in the absence of any family member. Kidney Wales believe the presence of the family is essential – both as a source of necessary information about the potential donor and in order to ensure that donation does not go ahead in the face of the deceased’s known objection to organ donation.
Melanie Wager who received her kidney in July 2010 said “Waiting for an organ is an extremely difficult time for anyone- it is like being on death row and it seems as if you are being further punished for being ill. Mentally, it is cruel for the patient and the caring family.”
Gaynor Taylor whose son Richard Taylor, died in 2004 aged 23 years and has been in the position as a donating family and decided to work on the campaign with Kidney Wales said” It is a difficult time for the Family and the burden will be more with doctors. For this reason plus the distress it causes, I have been working closely with Kidney Wales for the Soft Opt Out System for Organ Donation. It allows a clear statement of the law. I believe it will help families during this difficult time. I know because my late husband and I faced this decision. If anyone does not want to donate they can Opt Out. ”
Roy J Thomas stated “This consent law has had a positive and sizeable effect on organ donation rates of some 25%-35% higher on average in deemed consent countries. When introduced in Belgium only 2% opted out currently only around a third of the welsh population is on the organ donor register and this is around the same for the UK as a whole.”
EDITORS NOTES
The Facts
• One person dies every week in Wales waiting for an organ transplant. Three people die a day in the UK. The current system has failed those waiting.
• You are more likely to need an organ than to donate one.
• The new deemed consent system in Wales needs to be given stewardship and trusted to the medical profession. The Human Tissue act is there to oversee matters with a new Code of Practice for doctors.
• The new law in Wales is within European Human Rights legislation.
• The Organ Donor System in the UK needs reform and is outdated.
The State
Those who oppose this law state that this new system says it redefines the relationship of the individual and the state – this is exaggerated.
There are protections of the State on death. Any person aware of a dead body lying in the district of a coroner has a duty to report it to the coroner; failure to do so is an offence.
It is the Coroner on behalf of the State, not the family, who decides if an autopsy takes place. The Coroner can also order the keeping of tissue samples. It is also the Coroner that decides if the body can be released to the family, and the state places strict laws on the family regarding how, where and when they can dispose of the body.
So it is clear that the new proposed system does not redefine the relationship of the individual and the state. The coroner’s jurisdiction determines who the deceased was and how, when and where they came by their death. When the death is suspected to have been either sudden with unknown cause, violent, or unnatural, the coroner decides whether to hold a post-mortem examination and, if necessary, an inquest. The role of the Coroner / State in regards to the dead goes back to 1194 and was further clarified in Chapter 24 of Magna Carta in 1215. Admittedly it took a little longer to happen in Wales, 1284 to be exact.
Human Rights
Some have said that the proposed new system is a blatant attack on the human rights of the dead or dying, but it is the exact opposite. If someone is against organ donation, as it stands now, their family could go against their wishes and donate their organs, registered or not. In the new system, they can opt-out and their family will never be approached. The new system protects and extends human rights.
The human rights of the dead or dying are also extended in another profound way. As it stands now, families are asked whether they are happy for donation to take place, however, the new systems requires the family to represent the views of the person, who could donate through deemed consent. This is very different, and extends the human rights of the person over the present system.
The Evidence of Progress
Leading journals found that this consent law has had a positive and sizeable effect on organ donation rates of some 25%-35% higher on average in deemed consent countries. The evidence of Abadie and Gay of Harvard and Chicago Universities (2005) who conducted a study to examine this across 22 countries who have introduced presumed consent systems over a 10 year period. The study found that presumed consent had a positive and sizeable effect on organ donation rates of some 25%-35% higher on average in presumed consent countries. A number of countries have dramatically increased their donation rates following the introduction of soft opt out systems of organ donation.
Belgium
In Belgium, after 2 years of passionate and sometimes emotional discussions, widely publicised, the presumed-consent transplantation law was voted through in the Senate and in the House of Representatives by a large majority from all political parties in Belgium in 1986. Belgium saw a 55% increase in donation rates over 5 years. In Belgium:
1. The law is obviously accepted by most people and its application is no longer a matter of controversy. Less than 2% of the population have registered an objection to organ donation.
2. After the implementation of the transplant law in 1986, the kidney retrieval rate rose in 1987-1988 by 86% to 37.4 per million population per year. This increase in cadaveric donations was sustained.
3. Until 1986 work with teaching hospitals this had only limited results. After 1986 the number of collaborating hospitals with donor activities increased.
Belgium, for example, which offers a model which can most easily be compared to Wales and the UK, went from 18.9 per million population to 41.3pmp three years after the introduction of opt out legislation. Countries which have introduced other forms of presumed consent have also seen major changes. Austria went from 4.6 pmp to 27.2pmp after five years of presumed consent and Singapore from 4.7pmp to 31.3pmp three years after its introduction.
It is the donor’s views which are paramount and which have to be respected
•No family, no donation.
•It allows the doctor to take the view – currently it is placed on the family, if unknown.
History and Change
The first human organ transplant occurred on June 17, 1950, at the Little Company of Mary Hospital in Evergreen Park, Illinois. The suburban Chicago hospital, better known as the “baby hospital” for the high number of births there each year, was an unlikely place for this landmark in medical history. And the doctors who took part in the transplant tried to keep the highly experimental procedure quiet. The subject was Ruth Tucker a 44-year-old woman who suffered from polycystic kidney disease. She received a donor organ, a kidney, from a deceased person, making the procedure even more controversial for the Catholic hospital. At the time, the church was opposed to the idea that tissue could be taken from a dead person and put into a living person, and that the tissue would then come to life again. But the three doctors who performed the procedure had the confidence and trust of the sisters running the hospital.
Word leaked about the operation, and several days after the procedure, when the patient was doing well, the hospital and doctors went public with their breakthrough, making headlines around the world. The transplanted kidney functioned in the patient for about six weeks-enough time for her other kidney to begin working again it was a breakthrough and a success.
Christian churches all over the world support the system that we propose to implement here in Wales. Spain, France, Austria, Netherlands and, as mentioned, Belgium.
EndPRESS STATEMENT – KIDNEY WALES FOUNDATION
PROGRESSIVE LAW ON ORGAN DONATION
Debate on Final stages Tuesday 2 of July 2013 National Assembly For Wales
HUMAN TRANSPLANTATION (WALES) BILL
The leading campaigning charity in Wales on organ donation, Kidney Wales Foundation, has campaigned for 5 years for a change in the law on organ donation. The Charity