鈥淚 KNOW I sound kind of crazy, but I don鈥檛 have any doubts,鈥 says Brittany Burton. 鈥淚t鈥檚 a little bit of a sacrifice, but I鈥檓 sure it鈥檚 the right thing to do.鈥 Burton, a 27-year-old high-school counsellor from Durham, North Carolina, is talking about donating one of her kidneys to someone she met on the internet.
To voluntarily have one of your internal organs removed and given to a stranger does sound a bit crazy. But lately I鈥檝e been speaking to quite a few people who deem it perfectly rational, and who struggle to understand why more people don鈥檛 do it.
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鈥淚f something bad happened, of course I鈥檇 be disappointed, but I鈥檇 know I鈥檓 helping someone else,鈥 Burton says. 鈥淚t seems worth it.鈥 This could be the last time I speak to her before her operation, and I hope she is right.
Jeopardising your future health to donate a kidney to a loved one is understandable. But doing it for a complete stranger is a different matter. Nonetheless, people who are willing to become altruistic kidney donors are more common than you might think. And some in the world of transplant medicine are trying to capitalise on this generosity. The hope is that if we can understand why people do it, and encourage more to, it could end the agony of people dying for lack of a donor organ.
One place this is particularly evident is the UK, where official attitudes to altruistic organ donation are undergoing a transformation. Until about 10 years ago, anyone seeking to give a kidney to a stranger was thought to be mentally ill or secretly seeking payment, and altruistic donation was forbidden. Then the law was quietly changed to make it possible. In the first year, only six people donated, but now there are close to 100 altruistic kidney donations annually. By the end of last year, 548 people had donated.
Those kidneys are sorely needed. There are around 5000 people on the UK waiting list, and about 250 of them die each year for lack of a donor kidney. In theory, if an extra 250 altruistic donors a year could be found, those deaths could be prevented.
鈥淎ltruistic kidney donors are more common than you might think鈥
Some within the National 91色情片 Service believe the gap can be closed by encouraging more people to donate, but there are some obvious challenges. Can it be right to encourage people to do something that risks their health and even their life? And how do we deal with the growing numbers of people on the waiting list setting up websites begging for someone to donate specifically to them?
Despite these uncertainties, the UK health service has taken its first significant steps this year to try to persuade more people to donate to strangers. 鈥淭here鈥檚 an argument that says if you think altruistic donation is OK, then if we were doing it better, it would revolutionise our waiting list 鈥 we might even abolish it,鈥 says Nizam Mamode, a transplant surgeon at Guy鈥檚 and St Thomas鈥 hospitals in London.
Kidneys are unglamorous organs, with their function of filtering the blood to make urine. When they stop working properly, perhaps due to inherited problems or because of other conditions such as diabetes or high blood pressure, toxins build up in the blood. People get tired and sick, and without dialysis to remove the toxins they would eventually fall into a coma and die.
Dialysis is life-saving but also inefficient and inconvenient. It usually entails going to hospital for several hours three times a week and only replaces a tenth of normal kidney function, so people still feel lousy, particularly in between sessions. 鈥淚t鈥檚 a half-life,鈥 says Fiona Loud, policy director of the British Kidney Patient Association, who was on dialysis for five years before her transplant.
Kidney transplants took off in the 1980s after the development of medicines that could damp down the recipient鈥檚 immune system to stop it from attacking the foreign tissue. Most organs are from people who have died, but it quickly became clear that living relatives could also donate their 鈥渟pare鈥. Despite having two kidneys, most people can live a normal life with just one. Living donations lead to the best medical outcomes too, because the kidney is in better health and the surgery can be planned in advance.
As awareness grew, a few people began turning up at transplant units asking if they could donate a kidney to whoever on the waiting list most needed it. A handful of requests were approved in the US, but in the UK they hit a brick wall. In 1989, a government committee, the Unrelated Live Transplant Regulatory Authority, was set up to evaluate the requests. It invariably said no.
As the committee saw it, a donation between strangers contravened the most basic tenet of medicine 鈥 that doctors should 鈥渇irst, do no harm鈥. Any operation carries risks. As well as the pain and possibility of infection from the surgery, about one in 3000 donors will die on the operating table. There鈥檚 also a chance that the remaining kidney will fail in later life 鈥 although the risk of donors developing renal failure is still only about . That is lower than the general population, probably because successful donors must have good kidney function and tend to be healthier than average.
For people donating to a relative or spouse, these downsides are outweighed by the distress they would feel if their loved one died, the reasoning goes. But donating to a stranger doesn鈥檛 bring the same trade-off. 鈥淚t鈥檚 inherently something that we as surgeons find uncomfortable,鈥 says Lorna Marson, president of the British Transplantation Society.
Doctors even questioned the mental health of would-be donors. Kay Mason, a retired nurse, was one of those fighting to be allowed to do it. 鈥淚t was like a catch-22. They thought that if you want to donate you must be mad, and if you鈥檙e mad, we can鈥檛 let you.鈥
Generous to a fault?
But attitudes were changing, and after a public consultation, the newly formed Human Tissue Authority decided to let altruistic donation go ahead, as long as donors underwent interviews and a psychiatric assessment. In 2007, Mason became the first person to donate a kidney altruistically in the UK and, now aged 73, is still going strong on her remaining one.
While doctors no longer assume altruistic donors must be mentally ill 鈥 although they insist on checking 鈥 there is great interest in understanding what makes people want to do it. Abigail Marsh, a psychologist at Georgetown University in Washington DC, has interviewed many prospective donors at length. 鈥淭hey think it鈥檚 the most obvious thing to do and they have trouble understanding why more people don鈥檛,鈥 she says. Typically, she says, when they learn it鈥檚 possible, they very quickly conclude 鈥減eople are dying so I should do this鈥.
Marsh has also scanned donors鈥 brains and found that they have marked differences to another group she has studied in detail, psychopaths. Donors react more than average to pictures of fearful faces, while psychopaths react less, hinting that donors are .
To find out more, I go to the annual meeting of , a UK charity trying to spread the word about altruistic donation. 鈥淥ur vision is no one waiting for a transplant for want of a kidney,鈥 says chairman Bob Wiggins, an altruistic donor himself.
Many of the donors I meet talk of how moved they were to see others in poor health 鈥 several have known someone on dialysis 鈥 and how it led to their urge to 鈥渟hare鈥 their own physical good fortune. Most are also lifelong blood donors. They don鈥檛 resent people who choose not to donate but are frustrated with the health service for not doing more to recruit people.
The biggest obstacle is ignorance that donation is possible, says Lisa Burnapp, a transplant nurse at Guy鈥檚 and St Thomas鈥 hospitals and an adviser to the charity. 鈥淚f you don鈥檛 know that you have this choice, then how can you even contemplate it?鈥
A found that when told about altruistic donation, about a tenth of people in the UK say they would consider it. Even assuming that most people would not actually go ahead for one reason or another, the results still suggest that altruistic donation is a largely untapped resource. It would only take one in 10,000 of the population to donate to make the waiting list disappear, Burnapp says. 鈥淚t鈥檚 a back of the envelope calculation, but it鈥檚 useful for focusing the mind.鈥
As Wiggins says: 鈥淲e don鈥檛 need to convince everybody to give a kidney, we just need to find the ones who are willing to do it.鈥
In fact the UK agency responsible for organ donations, NHS Blood and Transplant, has just taken its first significant steps to raise awareness of living donations. It launched a Facebook campaign in February and is putting posters in some blood donation centres.
The campaign has the backing of Give a Kidney, but others are more cautious. The slogan 鈥淪hare your spare鈥, for instance, has raised eyebrows. 鈥淚t feels flippant to me,鈥 says James Hawkins, a psychotherapist in Edinburgh who is himself an altruistic donor. 鈥淚t鈥檚 a reasonable thing to do if you鈥檙e checked out carefully 鈥 but it鈥檚 not nothing, either.鈥
As well as the operation itself, which can take weeks to recover from, donors have to undergo a series of medical tests, interviews and assessments including a lengthy psychological evaluation. Many people start the process, but are put off by the amount of time they have to take off work.
Another factor that deters people is the cost. In the UK the NHS reimburses donors for time taken off work and their travel expenses. But the average outlay for US donors is about $2000, mostly in travel and hotel bills. Their generosity, meanwhile, can save tens of thousands of dollars in the costs of dialysis (see graphic). This has led to a debate about how to compensate donors without raising the spectre of selling organs, which is illegal in most countries. To get around this, Australia has just introduced a law to reimburse donors鈥 expenses and provide nine weeks of paid leave from work. About half of US states also give some paid leave. There are also more non-financial incentives that could be tried, says Burnapp. She is trialling a new system at her hospital to make the donor approval process faster and less bureaucratic.
When an altruistically donated kidney becomes available, it is usually allocated to a recipient in the same way a deceased-donor organ would be. Doctors use a complex algorithm to decide who on the waiting list gets it. The decision is based on factors such as the recipient鈥檚 age, health status, how long they鈥檝e been waiting and how likely their body is to reject the available kidney.
But that鈥檚 not always the case. In recent years, would-be recipients have started advertising for living donors through Facebook and other websites. There are even books and websites on how to market yourself.
These 鈥渄irected altruistic donations鈥 are problematic because they allow people to jump the queue. 鈥淏ioethicists don鈥檛 love these direct requests,鈥 says Marsh. 鈥淭he whole point of the [waiting list] is that it鈥檚 a dispassionate decision about who鈥檚 most likely to benefit 鈥 not who鈥檚 got the most effective advertisement.鈥
There are also websites such as , which lets prospective donors browse profiles of people on the waiting list like on a dating site. Burton used it to find her recipient, 55-year-old Paul Basken, who has polycystic kidney disease.
鈥淗ow can we compensate donors without raising the spectre of selling organs?鈥
Arguably these sites make a donation seem less like pure altruism by forging an emotional bond between donor and recipient. But that may also encourage donors to go through with it. Burton is glad she could choose her recipient. 鈥淚f I鈥檓 doing something that could potentially be so devastating to my body I want it to go to someone who will appreciate it,鈥 she says.
She admits she was influenced by other factors. Basken works in education like her, and they discovered a shared political outlook. 鈥淚 don鈥檛 think I could give my kidney to a Trump supporter,鈥 says Burton.
As the date of their surgeries approaches, I leave Burton and Basken in peace. Then, on the big day, I get an email from Basken鈥檚 wife telling me that all has gone well.
I keep up with things through Burton鈥檚 blog, She suffers more pain over the first couple of days than expected, but it quickly fades and she has no regrets. As their surgeries took place in the same hospital, Burton was even able to hobble round to Basken鈥檚 room to visit him.
A few weeks later, I arrange to talk to Burton one last time, and try again to get to the bottom of her thought processes. I鈥檓 not sure I succeed. I end up concluding that it鈥檚 as simple 鈥 and complex 鈥 as that some people are kinder than others.
鈥淓ven if it鈥檚 not 100 per cent the best thing I can do for myself in terms of life expectancy, there鈥檚 a saying that it鈥檚 better to be kind than to be right,鈥 Burton says. 鈥淭o me it makes perfect sense.鈥
This article appeared in print under the headline 鈥淕ive and let live鈥
