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Organ donation and CML

Hi All,

For those in UK there have been some recent changes regarding the Organ Donation process in that for England as from 20 May this year  all adults are considered to have agreed and deemed consent to donate unless they opt out of the Organ Donation Register.There are excluded groups but these relate more to mental capacity and for those not not yet adults rather than existing medical conditions.Wales has already a similar system and Scotland will follow in the not too distant future.NHS and other advice suggests that the donors family is consulted before any final procedure is undertaken at the time of death of the donor.

Checking whether those with prior medical conditions might still qualify the advice is rather vague and states that those with active cancer cannot be a donor and those who have experienced certain cancers might be excluded;those with previous treatments over three years ago might be considered and all might be able to donate corneas and some tissues.

I am sure that historically on this forum in the past we have considered this topic and we concluded that CML would very much exclude us and no one would want our organs still populated by Ph + even if undetectable by latest PCR. I suspect that any transplant specialist when finding out that we had a history of CML would decline to accept our organs.

As the advice seems to be rather generalized what  would you do in terms of opting out or not ? Has anyone discussed this with a front line medical professional ?

A related topic of whether we might be considered as a blood donor is fairly certain that they dont want us.

Possibly no one wants to sell us life insurance as well.

Regards

John

Hi, I have already opted out ,I wouldn't want anyone to have any of my organs .I really don't think they would have them anyway .regards ,Denise.

Hi John,

Opting out is as simple as using the NHS App and going to that section. I am sure you can do it through your GP as well, but this was was very simple.

From: https://www.organdonation.nhs.uk/helping-you-to-decide/about-organ-donat...

Can you become an organ donor if you have had cancer?

Someone with current active cancer cannot become an organ donor. However, it may be possible for people with certain types of cancers to donate after three years of treatment. It may also be possible to donate corneas and some tissue in these circumstances.

I have always been under the impression - and I am sure this was previous on the HTA.org.uk web site - that as CML patients we could not donate any parts of our body at all for transplantation. We can donate our body to medical research though.

David.

I did take medical advice on this point being very keen that my body should be useful after my death. With CML, we cannot donate blood and we cannot donate our organs for transplant. We can donate our bodies for scientific use or for teaching use.

I contacted the University of Birmingham concerning the donation my body but unfortunately they did not respond. I contacted the University of Leicester who confirmed that they would take a "CML body", however, they will not accept (for health and safety reasons) a body weight is greater than 80 kg. I gave up.

Thank you for your that helpful link,  David.

Sunny.