Victory for Kidney patients on EU Directive
EU Directive on Organ Donation
In order to regularize transplantation across all member states, the EU has been working on a new directive that will have the force of law in all member countries, including the UK. The NKF has always regarded this as a good thing, however half way through February we were alerted to an amendment to the directive that had been tabled. This amendment would have the effect of making “Living Donation” an operation of last resort, and banning Paired, Pooled and Altruistic donation altogether!
Fearing that this amendment would cause 1,000 operations a year in the UK to be abandoned, the NKF sent an urgent submission to the “amendments committee” pleading for this to be changed. We found that there was a mistaken view amongst member states that “Living donation” was the same thing as “the illegal trafficking of organs for payment”. Sadly, we found that there was not any appetite to change this amendment in the way we wanted amongst European MPs. Faced with this “blank wall” the NKF, The Irish Kidney patients Association, CEAPIR, the Kidney Alliance, the Department of Health, KPAs and individual patients began bombarding the 68 MEPs on the committee with our views. It culminated in the NKF taking a full page £2,000 advertisement in The Parliament Magazine which is distributed to ALL European MEPs.
I am very pleased to be able to tell you that in Europe today (16th March 2010) a consolidated amendment was passed which effectively removes the threat that amendment 31 would have posed to Living Donation in the UK and other member states. The actual wording of the agreed amendment is reproduced below.
We will never know whether it was the submission made by the NKF, the paid for advertisement placed by the NKF, the very many letters sent by individual patients and KPAs, the interventions by the Department of Health (requested by the NKF), the submission made by the Kidney Alliance, or the efforts of the Irish Kidney Patient Association on behalf of CEAPIR that tipped the balance — but something worked despite the outlook appearing very bleak at times — Thanks to you all, for your efforts. This is an example of how powerful patients can be when they take action jointly.
“Living donation should be seen as complementary to post-mortem donation and may be carried out where there is no suitable organ available from a deceased person.
Living donations are predominantly carried out among family members and close relatives and/or for the benefit of a recipient with whom the donor has a close relationship, or where it can be proven that the donor is not acting for the purpose of financial gain in order to prevent commercialization. Particularly, in the absence of such a close relationship, adequate provisions in national law of the Member States shall be made, thus assuring the highest possible protection of living donors.”
Timothy F Statham OBE