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Give and let live
Give and let live Would you sacrifice one of your kidneys to save the life of someone you’ve never met? Clare Wilson goes in search of the altruistic organ donors
I
“ KNOW I sound kind of crazy, but I don’t have any doubts,” says Brittany Burton. “It’s a little bit of a sacrifice, but I’m sure it’s the right thing to do.” Burton, a 27-year-old highschool 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’ve been speaking to quite a few people who deem it perfectly rational, and who struggle to understand why more people don’t do it. “If something bad happened, of course I’d be disappointed, but I’d know I’m helping someone else,” Burton says. “It seems worth it.” 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 36 | NewScientist | 24 June 2017
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,
“Altruistic kidney donors are more common than you might think” 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. Some within the National Health 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. “There’s an argument that says if you think altruistic donation is OK, then if we were doing it better, it would revolutionise our waiting list – we might even abolish it,” says Nizam Mamode, a transplant surgeon at Guy’s and St Thomas’ 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. “It’s a half-life,” 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’s immune system >
HARRIET LEE-MERRION
24 June 2017 | NewScientist | 37
The kidney lottery Most people on the UK transplant list eventually get a replacement kidney, but not all. If more living donors gave spare kidneys, fewer people would die waiting for one
5000
250 people die each year awaiting a kidney
adults on the UK kidney transplant list median waiting time 905 days
2950 transplants performed each year 1990
960
kidneys from deceased donors
from living donors of which about 85 are altruistic donors 92 per cent of transplanted living-donor kidneys are still functioning after 5 years
86 per cent of transplanted deceased-donor kidneys are still functioning after 5 years
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 – that doctors should “first, do no harm”. 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’s also a chance that the remaining kidney will fail in later life – although the risk of donors developing renal failure is still only about 1 per cent. 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’t bring the same trade-off. “It’s inherently something that we as surgeons find uncomfortable,” 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. “It was like a catch-22. They thought that if you want to donate you must be mad, and if you’re mad, we can’t let you.”
Generous to a fault?
10-year survival rate for transplant recipients: 75 per cent
£290,000
£102,000
Cost of dialysis over 10 years
Total cost of kidney transplant over 10 years (including drugs)
SOURCE: NHS BLOOD AND TRANSPLANT ANNUAL REPORT ON KIDNEY TRANSPLANTATION 2015/16; GIVE A KIDNEY
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 “spare”. 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
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 – although they insist on checking – 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. “They think it’s the most obvious thing to do and they have trouble understanding why more people don’t,” she says. Typically, she says, when they learn it’s possible, they very quickly conclude “people are dying so I should do this”. Marsh has also scanned donors’ brains and found that they have marked differences to another group she has studied in detail,
COPY SUB
G_Kidney
PAGE SUB
OK for press
38 | NewScientist | 24 June 2017
A kidney transplant is a routine procedure but there are still risks associated with the surgery
psychopaths. Donors react more than average to pictures of fearful faces, while psychopaths react less, hinting that donors are unusually empathic. To find out more, I go to the annual meeting of Give a Kidney, a UK charity trying to spread the word about altruistic donation. “Our vision is no one waiting for a transplant for want of a kidney,” 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 – several have known someone on dialysis – and how it led to their urge to “share” their own physical good fortune. Most are also lifelong blood donors. They don’t 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’s and St Thomas’ hospitals and an adviser to the charity. “If you don’t know that you have this choice, then how can you even contemplate it?” A survey by the charity 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
These “directed altruistic donations” are problematic because they allow people to jump the queue. “Bioethicists don’t love these direct requests,” says Marsh. “The whole point of the [waiting list] is that it’s a dispassionate decision about who’s most likely to benefit – not who’s got the most effective advertisement.” There are also websites such as Matching Donors, which lets prospective donors browse profiles of people on the waiting list
“How can we compensate donors without raising the spectre of selling organs?”
OWEN FRANKEN/GETTY
OWEN FRANKEN/GETTY
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. “It’s a back of the envelope calculation, but it’s useful for focusing the mind.” As Wiggins says: “We don’t need to convince everybody to give a kidney, we just need to find the ones who are willing to do it.” 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 “Share your spare”, for instance, has raised eyebrows. “It feels flippant to me,” says James Hawkins, a psychotherapist in Edinburgh who is himself an altruistic donor. “It’s a reasonable thing to do if you’re checked out carefully – but it’s not nothing, either.” 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, left). 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’ 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’s age, health status, how long they’ve been waiting and how likely their body is to reject the available kidney. But that’s 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.
Most people are born with two kidneys but can live perfectly normal lives with only one
like on a dating site. Burton used it to find her recipient, 55-year-old Paul Basken, who has polycystic kidney disease. 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. “If I’m doing something that could potentially be so devastating to my body I want it to go to someone who will appreciate it,” she says. She admits she was influenced by other factors. Basken works in education like her, and they discovered a shared political outlook. “I don’t think I could give my kidney to a Trump supporter,” 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’s wife telling me that all has gone well. I keep up with things through Burton’s blog, Kidney Transplant? Urine luck! 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’s 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’m not sure I succeed. I end up concluding that it’s as simple – and complex – as that some people are kinder than others. “Even if it’s not 100 per cent the best thing I can do for myself in terms of life expectancy, there’s a saying that it’s better to be kind than to be right,” Burton says. “To me it makes perfect sense.” n Clare Wilson is a reporter for New Scientist 24 June 2017 | NewScientist | 39
I
“ KNOW I sound kind of crazy, but I don’t have any doubts,” says Brittany Burton. “It’s a little bit of a sacrifice, but I’m sure it’s the right thing to do.” Burton, a 27-year-old highschool 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’ve been speaking to quite a few people who deem it perfectly rational, and who struggle to understand why more people don’t do it. “If something bad happened, of course I’d be disappointed, but I’d know I’m helping someone else,” Burton says. “It seems worth it.” 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 36 | NewScientist | 24 June 2017
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,
“Altruistic kidney donors are more common than you might think” 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. Some within the National Health 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. “There’s an argument that says if you think altruistic donation is OK, then if we were doing it better, it would revolutionise our waiting list – we might even abolish it,” says Nizam Mamode, a transplant surgeon at Guy’s and St Thomas’ 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. “It’s a half-life,” 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’s immune system >
HARRIET LEE-MERRION
24 June 2017 | NewScientist | 37
The kidney lottery Most people on the UK transplant list eventually get a replacement kidney, but not all. If more living donors gave spare kidneys, fewer people would die waiting for one
5000
250 people die each year awaiting a kidney
adults on the UK kidney transplant list median waiting time 905 days
2950 transplants performed each year 1990
960
kidneys from deceased donors
from living donors of which about 85 are altruistic donors 92 per cent of transplanted living-donor kidneys are still functioning after 5 years
86 per cent of transplanted deceased-donor kidneys are still functioning after 5 years
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 – that doctors should “first, do no harm”. 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’s also a chance that the remaining kidney will fail in later life – although the risk of donors developing renal failure is still only about 1 per cent. 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’t bring the same trade-off. “It’s inherently something that we as surgeons find uncomfortable,” 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. “It was like a catch-22. They thought that if you want to donate you must be mad, and if you’re mad, we can’t let you.”
Generous to a fault?
10-year survival rate for transplant recipients: 75 per cent
£290,000
£102,000
Cost of dialysis over 10 years
Total cost of kidney transplant over 10 years (including drugs)
SOURCE: NHS BLOOD AND TRANSPLANT ANNUAL REPORT ON KIDNEY TRANSPLANTATION 2015/16; GIVE A KIDNEY
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 “spare”. 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
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 – although they insist on checking – 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. “They think it’s the most obvious thing to do and they have trouble understanding why more people don’t,” she says. Typically, she says, when they learn it’s possible, they very quickly conclude “people are dying so I should do this”. Marsh has also scanned donors’ brains and found that they have marked differences to another group she has studied in detail,
COPY SUB
G_Kidney
PAGE SUB
OK for press
38 | NewScientist | 24 June 2017
A kidney transplant is a routine procedure but there are still risks associated with the surgery
psychopaths. Donors react more than average to pictures of fearful faces, while psychopaths react less, hinting that donors are unusually empathic. To find out more, I go to the annual meeting of Give a Kidney, a UK charity trying to spread the word about altruistic donation. “Our vision is no one waiting for a transplant for want of a kidney,” 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 – several have known someone on dialysis – and how it led to their urge to “share” their own physical good fortune. Most are also lifelong blood donors. They don’t 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’s and St Thomas’ hospitals and an adviser to the charity. “If you don’t know that you have this choice, then how can you even contemplate it?” A survey by the charity 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
These “directed altruistic donations” are problematic because they allow people to jump the queue. “Bioethicists don’t love these direct requests,” says Marsh. “The whole point of the [waiting list] is that it’s a dispassionate decision about who’s most likely to benefit – not who’s got the most effective advertisement.” There are also websites such as Matching Donors, which lets prospective donors browse profiles of people on the waiting list
“How can we compensate donors without raising the spectre of selling organs?”
OWEN FRANKEN/GETTY
OWEN FRANKEN/GETTY
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. “It’s a back of the envelope calculation, but it’s useful for focusing the mind.” As Wiggins says: “We don’t need to convince everybody to give a kidney, we just need to find the ones who are willing to do it.” 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 “Share your spare”, for instance, has raised eyebrows. “It feels flippant to me,” says James Hawkins, a psychotherapist in Edinburgh who is himself an altruistic donor. “It’s a reasonable thing to do if you’re checked out carefully – but it’s not nothing, either.” 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, left). 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’ 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’s age, health status, how long they’ve been waiting and how likely their body is to reject the available kidney. But that’s 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.
Most people are born with two kidneys but can live perfectly normal lives with only one
like on a dating site. Burton used it to find her recipient, 55-year-old Paul Basken, who has polycystic kidney disease. 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. “If I’m doing something that could potentially be so devastating to my body I want it to go to someone who will appreciate it,” she says. She admits she was influenced by other factors. Basken works in education like her, and they discovered a shared political outlook. “I don’t think I could give my kidney to a Trump supporter,” 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’s wife telling me that all has gone well. I keep up with things through Burton’s blog, Kidney Transplant? Urine luck! 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’s 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’m not sure I succeed. I end up concluding that it’s as simple – and complex – as that some people are kinder than others. “Even if it’s not 100 per cent the best thing I can do for myself in terms of life expectancy, there’s a saying that it’s better to be kind than to be right,” Burton says. “To me it makes perfect sense.” n Clare Wilson is a reporter for New Scientist 24 June 2017 | NewScientist | 39