I read two articles on the BBC News website this week about organ transplantation that left me unsettled but for different reasons. Now I am not a person that believes hook line and sinker what is written on any news website, (or any site really since we all have our biases) but the themes in the posts raise some important issues.
The first article was based around the story of a mother who started a Facebook campaign to get her son a new kidney. In the UK we have free health care supplied by the overstretched NHS (National Health Service) and nearly all the recipients of transplanted organs (including myself) have gone through assessment and then a period of waiting to see if a compatible organ becomes available and that you are top of the waiting list for that organ. Whilst I went through a waiting period of nine months for a liver transplant where body size and blood type are the matching criteria, this article was about kidney transplants where tissue type matching has to take place. Whatever organ you need, there are never enough to go around and because kidneys need to be tissue typed, the recipient pool is even smaller. A point to note is that if you go on the transplant list, then you are deemed to have less than twelve months to live.
Most people are born with two kidneys but in fact we only need one to live so it is much more common for living donor transplantation to take place in the kidney world. Living donor liver transplants are possible but it is much more dangerous for the donor because it involves slicing the liver up in a way that seven areas are taken. Slicing any organ up isn’t a great idea let alone one that is so blood rich like the liver. Anyway, a Facebook campaign for a kidney transplant makes sense because basically you want to reach as many living people as possible.
Going on Facebook and seeking a donor potentially by-passes the organ waiting list which removes the control organ specialists have over donated organs into the hands of the donor. This causes problems when you look at transplant recipients as a whole group of people. Because of tissue typing, family members are more likely to be a positive match for kidney transplants but there is still a 75% chance they don’t match. The transplantation service can match up pairs of recipients so that one donor matches the other paired recipient and visa-versa thus benefiting both recipients. Going it alone on Facebook does not allow this pairing.
Another issue is that potential donors only want to donate to specific individuals. The report quotes one donor saying that they only have one kidney to give so they have to be judgemental over who gets it. Eleven people have passed this donor’s requirements but none of them received it for other reasons (perhaps tissue typing). What about a person that may have matched the donor’s kidney but has since died because no other matches was found? The donor could be making a life or death judgement which for me is unacceptable because that decision will be based on emotional considerations rather than specific guidelines followed by trained doctors.
To put another hat on for a minute, the marketing of recipients will also disadvantage certain groups. People who are extroverts and have lots of money will come across much better than poor introverts. As an autistic person, I hate being the centre of attention so having to take part in some future reality television show where selling your abilities meant the difference between life and death, would be abhorrent to me, and not something I could do. Thankfully we are not there yet, and I hope we will never be but I can see Facebook campaigns being a step in that direction.
The general slogan of the people that do advertise for donors is that they are raising the general awareness of organ transplantation. And that is true, they are. Some people who wanted to donate to the boy but weren’t compatible went on to anonymously donate to other recipients. Brilliant, great, another person off the waiting list; but does that really justify jumping over other worthy recipients on the waiting list for your kidney? Does that justify the person that dies waiting for the kidney that somebody thought you were worthy of but this other person wasn’t?
This self-centeredness reminds me of when I was growing up in the 1980s. Suddenly greed was good, making money for yourself and sod anybody else was okay because eventually the wealth you gained would filter down to others through your spending. Common ownership went right out of the window, it was deemed inefficient and wasteful, and giving the power to the individual was seen as more dynamic and motivating. Personally I saw the global collapse of the economy in 2008 and the following austerity as having it seeds sown in 1980s and its greed is good years. My generation has suffered because of it, but it is my children and future generations that have really had the manure piled on them.
People want to take control because they feel it is the best way forward for their own interests. We see this in Brexit, and we are now seeing it in kidney transplants. And it may be true, you are better off controlling your own future, but who is to say that that future might not have been better if you had trusted someone better qualified to make that decision?
What would you have done if it had been your child that needed a kidney transplant? Personally I would trust the system that saved my own life to save theirs too. Yes I would be gambling with my child’s life, but actually life is a gamble anyway. You may think you are in control but you aren’t, needing a transplant should teach that to you if nothing else. An unsettling thought if ever there was one.
I am going to write a part two, to clear up that other article which shows a different side to organ donation.