The state of donation
Transplant chains, tipsy donors and printed livers: Chris Bourn delves into the extraordinary world of replacement organs
Illustrations: Christian Tate
13th October 2015 (Taken from: #13)
When the UK’s youngest ever organ donor was announced in October 2013, following a successful double kidney transplant at St James’s University Hospital in Leeds, much media attention was focused on the ‘tininess’ of the organs relative to their recipient. That the 4cm-long kidneys of a deceased five-week-old baby can be enough to keep a 22-year-old woman off dialysis is, without doubt, a marvel of human biology – and the delicacy of a procedure carried out simultaneously on paediatric and adult scales was a dramatic indication of just how far transplant techniques have advanced in recent years.
But perhaps the real medical breakthrough came not from the surgeons but from the baby’s parents – in the fact that, while enduring the loss of their child to heart failure, they somehow retained a clear-sighted view of organ removal and its immeasurable benefit to others, and signed the consent form.
The case may be illustrative of our changing attitudes towards our insides. From the new phenomenon of live organ donors stepping forward to offer their kidneys to complete strangers to the rapid recent advances in organic 3D printing – which is already Lego-blocking replica body-parts cell by cell for medical research – it seems we’re becoming less and less squeamish about organ removal and adaptation. And society in general is becoming more and more selfless in its outlook on donation.
The kidneys of strangers
“There’s no such thing as an altruistic act,” says Tom Cledwyn – a striking declaration from a man who at the age of 26 committed what many would argue is the ultimate gesture of unforced generosity. In April 2012 Tom gave one of his kidneys to someone he’d never met – and never plans to meet – as the 101st person to sign up for the UK’s ‘Non-Directed Altruistic Donor’ programme.
“I think people find it really hard to connect with an act of altruism,” says Tom, elaborating on his quibble, “and so I think the NHS calling it that, from a branding perspective, is so wrong.”
His concern is that the implied image of saintliness masks one of the strongest incentives to donate – the set of selfish motivations and personal rewards that he took pleasure in as an anonymous donor. “From the moment I read about it I wanted to do it; I enjoyed every part of the process and I’ve come out of it proud and fulfilled.”
The non-directed (i.e. anonymous) approach was only given legal sanction in 2004, following forceful lobbying by Kay Mason, who would go on to become the UK’s first altruistic kidney donor. And it only became possible with the regulatory apparatus provided by the Human Tissue Authority – the body formed in 2006 in the wake of the Alder Hey Hospital scandal of the late ’90s, in which medical staff were retaining the organs of dead children without parental consent.
Even after the first altruistic incision had been made, expectations of uptake were low to the point of cynical. According to the charity Give a Kidney, the NHS was initially planning for ten ‘Good Samaritan’ donors a year. In fact as word has spread the UK’s donation co-ordinating body, NHS Blood and Transplant (NHSBT), has seen interest rise by orders of magnitude, with 103 kidneys being gifted anonymously during 2012-13 compared to 38 the previous year. There was also one case, the first of its kind in Britain, in which a living donor gave a portion of their liver to a stranger. Around one in 12 live donations are now being made altruistically.
And for many more people it seems that carrying a donor card in their wallet is no longer enough. As Tom’s transplant co-ordinator explained to him, the renal department at King’s College Hospital in south London is now fielding phone calls on spec from would-be donors – “especially late on a Friday afternoon,” adds Tom, “when people have had a boozy lunch and gone, ‘That sounds like a good idea!’”
Tom’s own moment of inspiration came while killing time on the internet one evening, waiting for his girlfriend to come home from work. Having stumbled upon the story of how Kay Mason inaugurated altruistic transplants with her own donation, he made up his mind there and then, on the grounds of “logic and logic alone”. He weighed the minimal risk to himself (the one in 3,000 chance of death posed by a procedure under general anaesthetic) against the benefits his kidney might confer on someone who needed it (a 95 percent chance of extending their life by up to 30 years, an invaluable improvement to their quality of life) and came to the conclusion that rationally it was “a no-brainer”.
But it was the element of anonymity that gave the notion a “real romance” that he “absolutely fell in love with”: “Just the idea of doing something for someone you know nothing about – it’s a great way to do it… Having to rely solely on the good intention, rather than on seeing the results.”
It was a sentiment that carried him through the next 18 months of intense scrutiny and process: submitting to the “full MOT” in various rounds of medical screenings; three or four sessions with a psychologist who, new to anonymous donation himself, rigorously vetted Tom’s motivations; emotive challenges from family and friends who were uncomfortable with what he was doing – even if they couldn’t always put their finger on why.
His year-and-a-half-long emotional steeplechase culminated in Tom coming round, groggy from anaesthetic, in a Guy’s Hospital bed to encouraging words from his sister – “You’ve had a sex-change, Tom” – followed by what he describes as a “strange sense of ‘job done’.”
Only it wasn’t – not for the dozen or so people Tom found himself sharing a renal ward with later that day. They were all on dialysis, all still waiting for their donor. “That’s something that’s stayed with me since” – a feeling of “slight frustration at having done what I could but really wanting to do more.” It’s a feeling, he notes, that is shared by all the other altruistic donors he’s met since, who are intensely aware that at any one time around 8,000 people in the UK need a kidney transplant. “I said to my surgeon as I left, ‘I’ll see you next year for the other one…’”
It’s easy to see why, in the context of Britain’s organ shortage, a single kidney can come to seem insignificant to its former owner. But Tom offers a practical perspective on this: “It costs an average of £30,800 a year for someone to be on dialysis,” he says. “I’d never thought I was making a huge difference to the NHS budget, but my kidney could be staffing a reception, or paying a nurse’s salary. The scope of it became so much bigger the more I was immersed in the process.”
Prints among men
While there are more than 19 million people on the national Organ Donor Register – some 30 percent of the UK’s population – it’s rare for a person to die in circumstances conducive to a successful transplant, and so demand for organs always outstrips supply.
Meeting this demand is where 3D printing may well come in – eventually. “I think you’re looking at many decades before [printed] organ transplants are possible,” says Professor Kevin Shakesheff, head of the University of Nottingham’s School of Pharmacy, “which seems like a long time. But actually it’s not if you think of the incredible thing people are trying to do. And once we learn how to do it, we can do it forever.”
Shakesheff leads a research team working towards the 3D printing of bone and cartilage tissues as a living replacement for traditional prosthetics. Their system involves layering clusters of living cells held in a gel suspension and positioned by the printer nozzle with “the same level of architectural control that you see in the body.”
“A classic 3D printer is melting materials at a very high temperature,” he explains. “We achieve the same level of printing precision but make the temperature differences much more subtle, and much more around body temperature – so there’s no heat damage to the cells.”
While the professor and his team are concerned primarily with structural tissue types – ask him nicely and he’ll show you a 3D-printed nose Da Vinci wouldn’t sniff at – he is keeping a close eye on advances in live organ replication using similar techniques. And in particular the US firm Organovo, which has recently made a big impact in ‘bioprinting’ liver tissue – to the extent that on 29th January 2014 the company sensationally announced that it would be bringing fully functioning, 3D-printed human liver tissue to market by 2015. This will be in the form of samples, not fully realised organs, to be used in pharmaceutical trials to test the hepatic toxicity of new drugs. The next step, hinted at by Organovo’s CEO Keith Murphy during an interview on US TV, would be clinical applications of the technology – including the printing of liver and kidney tissue “patches” to repair damage to limited areas. “And as time goes on,” Murphy explained to the interviewer, “we’ll be working on producing fuller organ structures.”
The prospect of full transplants using this technology remains distant though – especially for printed kidneys. “The structure of the kidney has a lot more pipes and plumbing than a liver,” warns Shakesheff. “There’s a very clear flow of different fluids within it that results in its ability to detoxify the blood… A partially functioning liver is likely to be having some good effect [on the patient], but with a kidney the whole tubular structure would have to be just right for it to work. It’s one of the most difficult things to reconstruct.”
Pass the scalpel
In the meantime, ingenuity in the less glamorous field of logistical administration is helping to gain ground on demand, especially in the United States. The ambitious concept of a ‘chain donation’ is one American innovation whose impact is just beginning to be felt in the UK. The idea is that in cases where friends or family members are found to be incompatible as donors, they are instead encouraged to give their kidney to someone else in return for a match being found elsewhere for their loved one. In this way, transplant co-ordinators are now able to leverage a single altruistic donation to trigger a relay of surgery between compatible donors and patients.
In the US this method has occasionally reached Olympian proportions. One such sequence, known as ‘Chain 124’, involved 60 people – 30 donors, 30 recipients – and snaked its way from initial donor Rick Ruzzamenti in California to final recipient Donald C Terry in Illinois via 17 hospitals in 11 states over four months in 2011 and 2012.
Another, more controversial approach in the US has been the use of social media to spur people to altruism. Facebook pages such as ‘Find a Kidney Central’ along with a host of personal appeal pages have become a popular transplant resource. They were given a boost by Facebook’s involvement in a worldwide organ donation campaign; in May 2012 the company included ‘Organ donor’ as an option on user profiles and provided links to donor registries in a number of countries. Many other would-be donors and recipients have made use of introductory services such as MatchingDonor.com, which attempts to link international altruists with American patients and currently claims around 13,000 donors are registered on its site.
Tom is conflicted about the merits of removing anonymity from the altruistic equation. “The NHS bases all its decisions on health – and it’s right that no part of the decision should be left to the individual donor, even though it’s their kidney,” he says. “Inevitably [those patients on a social network] who are charismatic, young, healthy, good-looking maybe, white maybe, sadly will have more interest than those who aren’t. That makes me feel uncomfortable. But are there more donors willing to make that leap of faith because they know the story behind that person? Would more donations happen if that were commonplace? Yes. And I can’t help but think that, within reason, anything that can be done to facilitate or speed up the amount of donations the better.”
Although personally he “loved the idea of not knowing”, in the end Tom unwittingly discovered more than he was supposed to about the person who is now home to his left kidney. Having overheard a conversation outside his cubicle on the ward, then having joined the dots around concerns during the vetting process about his unusually large kidneys (“Thank you very much…” – he’s pretty proud of his renal girth), Tom deduced it had gone to a seven-year-old girl. And despite his determination not to be influenced by value judgements about how ‘deserving’ his recipient might be, he admits to a twinge of satisfaction in the revelation. “I find myself forcing myself to say this – because just it going somewhere was good enough – but I guess the better the result, the better. And that is a better result.”
For the person on the receiving end of a successful transplant, whether their donor is living or dead, the result is always exactly the same: they get their life back. The beneficiary of the five-week-old baby’s kidneys in Leeds, Samira Kauser, a 22-year-old healthcare assistant from Halifax, West Yorkshire, is now able to enjoy an existence free of the drudgery of nine hours a night on dialysis.
Almost two years after his operation Tom remains “utterly proud” of his own decision, and the fact “that it was a decision I made informed and one I’ve pursued with conviction. I can’t imagine anything else that would have been as beneficial to me as this, despite what it’s done for someone else.”
And the condition of anonymity has had its own unexpected side-effects. Far from being a barrier between Tom and his recipient, or between him and the payoff one might expect from an act of extreme generosity, it’s put him in touch with something bigger – something like what it means to be part of a species. “What I’ve learnt about other people is that we are absolutely connected to them. Whether you know them or not. And that connection is there to make the most of in life.”
We hope you enjoyed this sample feature from issue #13 of Delayed Gratification
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