Image: stitchwork kidney

Filling the Donor Deficit

Image: stitchwork kidney

Image credit: Spec-ta-cles (via Flickr)

I am not in the business of raining on parades.

Neither am I a cynic, but I have some sympathy with American dramatist Lillian Hellman’s assertion that ‘cynicism is just an unpleasant way of saying the truth’.  Because, when I question the significance of the recent widely-reported rise in altruistic kidney donation, I am bound to be thought of as cynical.

Altruistic kidney donation is the practice of a living person donating a kidney to a stranger.  And plenty of people do need one.  Figures show that 7,000 people are waiting for a kidney transplant each year in the UK alone, and 300 die annually while still waiting.  The news that altruistic donation is on the rise has been rightly lauded.  But, speaking as someone who knows first-hand the benefits of kidney transplantation, I argue there is still a huge amount of work to be done.

I’m not being cynical, just factual. Although the number of altruistic donors is on an upward curve – in this country, 40 people donated kidneys to strangers in 2010/11, up from 23 the previous year – this is still, I’m sorry to say, a piffling number.  To give it some context, there were 55 people on my Master’s course last year.  I am passionate about the opportunities organ donation – both of the living and cadaveric variety – offers to those who need it, but without significant education around the subject, an uphill battle will always be the order of the day.

Before my kidneys failed in 2007 I knew nothing about renal disease.  On that October day, I remember waiting, weak as a kitten in a wheelchair, for a scan on my newly-defunct kidneys.  As I asked my family what failed kidneys meant, the man across from me, also in a wheelchair, ran his finger across his throat in the time-honoured ‘death’ gesture.  I was horrified, but for all I knew at that time, he could have been right.  I knew nothing of the importance of my kidneys.  I know marginally more now, but the point I’m making is this: there is a pervasive lack of knowledge about kidney disease and, more importantly, from the public regarding who can act as a donor.  I’ve heard people justify non-donation by various means: ‘I’m too old,’; ‘I have a heart murmur’; ‘I’m not related’. In many cases, these reasons need not be barriers to donation, but certain preconceptions have seeped into public consciousness and are difficult to shift.

But what accounts for the lack of knowledge regarding donation? Professor Neil Turner, chairman of Kidney Research UK, and professor of nephrology at Edinburgh University, says he still comes across families who say, with respect to organ donation, “what do you want to be doing a crazy thing like that for?”

He added: ‘I sometimes get the feeling that we are slightly too cautious about people’s desire to give a kidney. I get the impression that it can become a struggle to be a donor.’

Transplant work-up can, in some cases, be a lengthy process. My own took roughly six months, although that time can vary centre by centre – work-up can be as little as one month, so those thinking of offering a kidney altruistically need not feel daunted by the time it takes to reach the operating table.

Isolated outbreaks of good news regarding altruistic donation, although welcome, are not enough without a concerted campaign to inform the public about its benefits. Some would argue that changing the law to force people to opt out of donation, rather than opt in as is the case now in Britain, would solve the problem. I would counsel against this, however. People should have freedom of choice over how they use their bodies, both before and after death, in my opinion. It should be their choice to opt in, rather than having to opt out.

This makes altruistic donation all the more important.  Having just passed the time of year associated with giving, think about how you could give something and save a life.  That surely is the best gift of all.

Ben Jones studied for an MSc in Science Communication in 2011.  To support Kidney Research UK please visit their website.

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