Memorandum by the Cystic Fibrosis Trust
This submission from the Cystic Fibrosis Trust
reflects a growing concern on the part of the Cystic Fibrosis
community, including those affected by Cystic Fibrosis, the medical
teams who look after them and the transplant teams in the UK that
the shortage of lungs for transplantation means that many (probably
around 50%) of those with end-stage Cystic Fibrosis who would
be suitable for a transplant die because lungs are not available.
We therefore welcome this opportunity to make a submission to
this enquiry.
1. We recognise that there is an EU wide
shortage of organs. We also recognise that this is hugely variable,
depending not only on the country in which people live, but the
part of that country in which they live. We would wish this to
be addressed in a constructive and positive manner to improve
the opportunity for all of those within the European Union who
need new lungs to be able to benefit from this procedure.
2. We recognise that there has been considerable
improvement in Spain, and would urge the European community to
consider adopting some of the Spanish initiatives to improve the
situation.
3. It is extremely important to raise public
awareness of organ donation. It may be sensible to remind people
that they are far more likely to need an organ than to be in a
position to donate one. There could also be a process where people
sign up to the principle of transplantation in general, either
as a potential recipient or a potential donor, making it clear
that this is a two way commitment (ie to be eligible to receive
an organ, one must also consent to donate organs).
4. Donor cards are a good idea, but a national
register is even better in that people do not always have their
donor card on their person at the time of a serious accident.
5. The Cystic Fibrosis Trust has no objection
in principle to the use of volunteer living donors, but recognises
the complexity of this situation as well as the ethical problems
involved. Those with Cystic Fibrosis who need lungs need two lungs,
and so two donors are needed for each recipient. It is, therefore,
a very rare operation in that theoretically the mortality rate
could be 300%, of whom two people were not ill in the first place,
so this has to be explored very tentatively.
6. The Cystic Fibrosis Trust would have
no problem with cross-border organ donation within the EU, although
recognises that as donor lungs have to be used within five hours
of being retrieved, there are obviously practical problems.
7. The Cystic Fibrosis Trust understands
that all major religions have given their approval to transplantation,
and ethical issues can usually be addressed in a positive manner.
However, we would be very reluctant to condone a policy which
insisted that organs should be available from a person who had
made their views known before their death. On a more contentious
point, we also have grave reservations about taking organs from
a brain dead patient if their family is vehemently opposed to
this process. We feel it would be counter-productive and would
cause considerable ill will, which is likely to harm the transplant
programme more than it will help it.
8. We see the health and social welfare
benefits of organ transplantation as being considerable. Someone
with Cystic Fibrosis who will otherwise die shortly may have an
extension of many years of good quality life, during which time
they may be able to work and make a contribution to society, to
their own family, and indeed to fulfil many of their own ambitions.
This cannot be underestimated.
9. The medical risks of transplantation
are well documented. However, in the case of those with Cystic
Fibrosis, for those who need organs there is no viable alternative
other than inevitable death.
10. We would of course strongly oppose the
illegal trafficking of organs.
11. On the specific issues which are considered
to be of relevance to the commission, whilst the Cystic Fibrosis
Trust would like to see a presumed consent approach adopted, as
already outlined we would not wish to see this managed in a confrontational
manner. For either an individual who does not want their organs
to be used, or from a distraught family who even after careful
and sensitive counselling are adamantly opposed to allowing the
organs of their loved one to be used, we feel it would be counter-productive
to proceed.
12. The Cystic Fibrosis Trust is actively
involved in obtaining relevant information and making recommendations
for improvement in the area of transplantation in general, and
lung transplantation in particular. We will be submitting a paper
to the Department of Health shortly. We would be very pleased
to forward a copy of this to the enquiry if it would be helpful.
October 2007
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