Memorandum by the Royal College of Physicians
and Surgeons of Glasgow
THE EU COMMISSION
HAS FOCUSED
ON THREE
ASPECTS OF
ORGAN TRANSPLANTATION
— risks and safety issues;
— organ shortage and donation
issues; and
— organ trafficking within the
EU.
Risks and safety issues
The Commission focuses on the risks of disease
(particularly viral) transmission from the transplanted organ.
This is a risk, but within the UK screening of donors is excellent
and the risk is absolutely minimal. The Commission's concern is
that with the expansion of the EU organs from "less well
developed" countries may become available to patients throughout
the EU and it is essential to ensure that these organs are adequately
screen and of the same standard as those from the "more developed"
countries.
Many of the new Member States have established
transplant programmes and present their work at international
professional meetings and publish in reputable transplant journals
where their results are comparable to those from the older Member
States. Transplant colleagues in these countries may be offended
by the EU innuendo that they are not working to the same standards
as the rest of us. There may be some countries where different
standards apply and measures must be put in place to help these
programmes not just so that organs exported to the rest of us
are acceptable to us but so that the citizens of that country
have good quality organs and transplantation services for their
home needs.
Organ shortage and donation issues
There is acceptance that organ donor rates vary
amongst the EU countries and measures need to be taken to increase
donations in all countries because of the health and economic
benefits afforded by transplantation compared with treatments
such as renal dialysis or death.
The organ donor rate in the UK is a disgrace,
with most European countries having a higher rate than us and
some twice or even three times the rate in the UK!
I will deal more with this in addressing the
specific consultation questions posed by the House of Lords Committee.
Organ trafficking within the EU
With free access to health care throughout the
EU there is the possibility of people from one country seeking
transplantation in another member state where they perceive a
better/quicker chance of receiving an organ. In the West of Scotland
we have one patient who moved to Spain to try to get a kidney
faster but to date has been no more successful there than he was
here. At present this is not much of an issue within the UK. For
us there is more concern about our patients going to the Indian
sub-continent for transplantation but that is obviously not dealt
with in the European document.
The Impact Assessment, as well as setting out
minimal standards for risks and safety issues, also stresses the
need for high quality data collection and storage so that all
the information about the organs etc is available for whoever
may require it.
Comments about the particular issues on which
the House of Lord's Committee has requested responses.
EU-wide shortage of organs available for transplantation
Within the transplant community we believe there
are adequate numbers of organs available if only we could get
access to them. There are people dying everyday in ITUs and A&E
departments who are not even considered as organ donors but who
would be suitable to donate some if not all organs, and of the
potential donors we are informed about in more than 40% donation
is refused/rejected by the relatives. May patients have living
family members etc who could donate an organ such as a kidney
to them and this form of transplantation is inadequately embraced
by the population. The deceased donor rate in the UK at 12-13
per million population is quite inadequate with a transplant waiting
list of over 7,000 and many more people being added to the list
per year than receive transplants in a year.
Organ shortage although an EU-wide problem is
a particular issue in the UK! It is multifactorial—family
refusal rates (> 40%), lack of ITU resources/facilities, lack
of engagement of other health care professionals, social attitudes
etc.
This issue is currently under review by the
DofH Donor Task Force which is chaired by Elizabeth Biggins and
is due to report within the next few months.
Organisation of organ donor and transplantation
systems
This is the main remit of the DofH Donor Task
Force. Preliminary communications show the way the Task Force
is thinking and what its recommendations are going to be. There
must be involvement of all health care professionals in identification
of possible organ donors and facilitating the donation. It is
not the sole responsibility of the transplant team to find donors.
By definition we do not have any donors; it is only when a clinician
in another specialty has a patient who dies and informs us about
it that we can then try to bring it to organ donation. The Task
Force report is expected to place organ donation as a responsibility
for all "health care professionals"—doctors, nurses
and anyone working within the health profession whether in primary,
secondary or tertiary care, by identification of possible donors,
facilitating the donation, and raising public awareness of the
need for donated organs.
Another aspect of the report will deal with
accountability and it is anticipated that the Chief Executives
of Trusts and Health Board will be made ultimately accountable
for the provision of donated organs from within their institutions.
They will be required to ensure that all potential donors are
identified (we know from audit that at present they are not) and
that the facilities and will are there to progress the donation.
The report will also address the organisation
of surgical donation teams which go to the hospital where the
donor is to retrieve the organs. These teams will require to be
adequately staffed with a robust structure rather than relying
on good will as we often are forced to do at present. Scotland
had a pilot scheme of a properly structured team of surgeons,
theatre nurses, perfusionist and anaesthetist but despite a economic
report of the cost benefit of having an anaesthetist on the team
the Scottish Health Boards have not supported this service and
so we are unable to provide a complete organ retrieval service
since there are some donors who are lost to us because on the
lack of specialist anaesthetic input.
I think it is essential that the House of Lords
Committee takes heed of the Donor Task Force report when published
and adds its weight behind the recommendations.
Raising public awareness of organ donation
It is essential to make everyone is our society
aware of the difference that a successful transplant makes to
a person's life and the need for donated organs to achieve this.
All ways of achieving this need to be embraced although from the
transplant side we hope we have already engaged in all possible
means of bringing this to the public via press and media advertising
campaigns, inclusion in the school curriculum, talks to interested
groups, distribution of information leaflets etc at public events.
We are open to any suggestions that will get the message of the
need for organs to a larger audience.
Use of organ donor cards, including the idea of
a European organ donor card
The UK organ donor card was introduced nearly
30 years ago and for its time it was a major advance. It has now
to a large extent been superseded by the Organ Donor Register.
A card is only useful if it is with the potential donor when he
dies and can be seen. I would, because of the amount to travel
and the increasing possibilities of people dying in an EU country
other that there usual country of residence, be in favour of a
European system of registering their wish to donate organs when
they die.
However, I consider a card to be a retrograde
step and would favour an electronic system which could be "fed"
from the electronic registers of individual countries and be accessible
to ITUs, A&Es and transplant teams of all Member States.
Use of volunteer living donors
The laws within the UK now permit this and as
long as the rights and health of the altruistic living donors
are respected and upheld then I support this source of organs
which has a lot to offer in renal transplantation in innovative
ways of obtaining organs for people who are difficult to transplant.
Ensuring the quality and safety of cross-border
organ donation within the EU
This is essential but it is also essential to
ensure quality and safety of all organ donation within the EU
(and the rest of the world) even when the organ does not cross
a border. There may in some countries be the need for economic
help and resources to achieve this. Viral and other infective
risks do vary from country to country and there are some viruses
prevalent in some countries that it would not be cost effective
to routinely screen for in the indigenous UK population.
Ethical issues relating to organ donation and
transplantation
If we are a European community ethically there
has to be equity of access to transplantation throughout the EU.
This is not achieved if different countries have different donor
rates and differing disease profiles requiring different numbers
of transplants. This has been addressed in the UK with an alteration
to the organ allocation scheme where all organs are viewed as
a UK resource not a local one so that each organ goes to the person
in most need of it—allocated by a transparent system of
points awarded to patients according to how long they have been
waiting, age difference between donor and recipient, how easy
it will be for them to be compatible with other organ donors,
how immunologically sensitised they are etc.
All of the major religions are in favour of
transplantation but often individuals site their religion as an
excuse against donating their organs or those of a family member.
Every donor must have their rights respected, which includes their
wish to donate as much as any wish they have not to donate.
Health and social welfare benefits of organ transplantation
When considering the organs whose work can partly
be done by machines eg kidneys, transplantation is proven to significantly
improve not only the quality of the patient's life but also the
length of life compared with dialysis. For organs for which no
substitute is available eg liver, heart etc transplantation enables
the person to live and is a direct survival issue. The cost benefits
of transplantation are well worked out, documented and published
and there are numerous publications about the health benefits.
Medical risks of organ transplantation
Yes there are medical risks with transplantation
as there are with any form of disease treatment. Some relate to
operative risks as with any surgical procedure and some are immunological
or infection related. Within the UK the benefits of transplantation
far outweigh and medical risks if we comply with our professional
standards and guidelines in relation to both donor and recipient
acceptance criteria.
Illegal trafficking in organs
It is not illegal to go to another country to
get a transplant. What is illegal is for non regulated money (or
money in kind) to change hands and particularly for the donor
or worse a third person acting as an agent to make money from
it. There is debate within the transplant community about whether
donors should receive payment for donating an organ. Those who
favour this approach to increase donor numbers would stipulate
that the money has to be at an agreed rate and paid by an authority
such as a Health Board, not by the person who receives the organ.
RESPONSES ON
ISSUES RELEVANT
TO THE
COMMISSION DOCUMENT
Questions which may arise in relation to organ
donation and transplantation from a faith-based point of view
See my comments about this in the ethics issues
above.
Questions which may arise in relation to organ
donation and transplantation from the point of view of population
sub-groups within the UK
Different population subgroups are/were disadvantaged
within the UK because of the mismatch between the proportions
of the different blood groups between the donors and the recipients.
This is recognised and the changes to the organ allocation system
have helped to improve the system with some blood group O organs
being made available to blood group B recipients without detriment
to the blood group O recipients.
Most of the population subgroups have a lower
donation rate than the indigenous British population and so if
the allocation system is primarily driven by tissue type matching
it is inevitable that more organs will go to "British"
(ie white) people. This has been recognised and by changing the
emphasis in the allocation system to waiting time with less commitment
to tissue type matching more people from the population subgroups
are now receiving organs.
The "presumed consent" approach for
identifying organ donors
This appears to be favoured by English politicians
but the health department in Scotland has ruled out a change in
the law to accommodate this preferring to stick with the system
in the present law of the donor's expressed wishes while alive
being carried out after death within an opting in system. Unfortunately
it is very difficult to enforce this under the present law since
although the donor may have legally registered his wish to donate
organs after death which transplant surgeon when faced by the
donor's relatives saying that they do not agree to the organs
being retrieved would be prepared to cross the relatives' "picket
line" and take the donor to theatre to take out the organs.
The media backlash would further reduce organ donation.
The arrangements for taking into account the views
or relatives about removing organs for transplantation from a
deceased donor
See my response to the question above. Even
with presumed consent in practical terms it is impossible to physically
push aside relatives and wheel a donor into an operating theatre.
All the countries with presumed consent in their laws still in
effect ask the relatives. It is essential to adjust the thinking
of all members of society so that it is accepted as the norm for
organs to be retrieved from everyone after death unless there
is a medical contraindication to the suitability of the organs
for transplantation.
VIEWS ON
THE NEED
FOR AN
EU ROLE IN
THE FIELD
To promote cooperation between Member States in
order to share expertise and to expand the size of the potential
pool in each Member State
At a medical level we already exchange expertise
through our professional organisations and I don't see that the
EU would improve that. The EU with its "stick" could
encourage governments and institutions to improve facilities etc.
I don't see what the EU can do to improve donor rates other than
by providing ITU resources etc, but if it can I am all for it.
To provide a cross-border framework for the organisation
of organ donation and transplantation, with harmonised rules that
would provide EU citizens with higher standards for organ safety
and quality than can be assured by the national legislations of
Member States acting separately
Could be useful to "encourage" all
countries to adhere to minimal acceptable standards and provide
a form of quality assurance for organs being used outside the
country of origin. Important to provide good quality transplantation
for all citizens of the EU.
To enable more effective action across the EU
to fight illegal organ trafficking
It is illegal; but if it is happening what more
can the EU do about it if the countries involved are not enforcing
the laws they already have?
8 October 2007
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