[Cause Exploration Prizes] Legal Efforts to Increase American Kidney Donations

By Open Philanthropy @ 2022-08-24T10:36 (+11)

This anonymous essay was submitted to Open Philanthropy's Cause Exploration Prizes contest and published with the author's permission.

If you're seeing this in summer 2022, we'll be posting many submissions in a short period. If you want to stop seeing them so often, apply a filter for the appropriate tag!

Introduction

After writing precisely 3700 words of this, I discovered that I had overlooked OP's previous shallow investigation on this exact topic. (I don't even know how I overlooked it  –  I was sure I'd checked the database.) OH WELL. Fortunately, however, I am using rather more up-to-date statistics, and have investigated somewhat more in-depth. The previous investigation relied on statistics that are nearly a decade old, and it notably overlooked (for obvious reasons) an important public opinion survey that was conducted much later. It's quite possible that this investigation won't add anything of especial use, but I'd already written most of it, so I figured I might as well throw dialysis patients a bone and finish the thing.

What is the problem?

In a nutshell, that there are Americans who do not have enough kidneys.

Humans need kidneys for the sake of their renal system. If their kidneys fail utterly, the humans must be regularly hooked up to dialysis machines. Your kidneys are in charge of filtering various undesirable substances from your blood and shunting them out to be excreted via urination. A dialysis machine substitutes in this process, although it is a highly flawed substitute that only filters out about a seventh of what a healthy kidney does. Generally an end stage renal failure patient on dialysis will spend four hours at a time, three days a week, on hemodialysis at a dialysis center. Sometimes dialysis can be done at home, but it takes up more time, and can take up about as much time as a part-time job.

Dialysis costs tens of billions per year (pg 4), but fortunately everyone's favorite President  –  Richard Nixon –  ensured that the individual patient can very usually afford it via Medicare. However, it is a highly imperfect solution. Not only is needing dialysis a significant decrease in quality of life (this is why many recipients are happy to accept kidneys from sixty-year-olds: practically anything is an improvement), but USA Today claims that "The mortality rate for patients that go on dialysis is about 20% annually, which works out to be a five-year survival rate." Although of course someone whose body is failing enough to warrant dialysis is more likely to die of other medical causes, a study of a thousand dialysis patients from 2022 to 2011 found that getting a new kidney more than halved patient fatality rate, with the difference increasing with patient age (Figs 38 and 39, https://doi.org/10.1016/S1769-7255(13)70042-7). (Not counting just kidneys: as of 2018, thirty-three Americans die every day due to lack of an organ.)

Kidney deficits kill more Americans than car crashes(!), and people keep needing more. As I write this, there are 105,951 Americans waiting for organ donations, and nearly ninety thousand of those are waiting for kidneys (OPTN data as of 28 July 2022; you can play around with the tables at https://optn.transplant.hrsa.gov/data/view-data-reports/national-data/). According to the OPTN annual report for 2019, "only a quarter of waitlisted patients receive a deceased-donor kidney transplant within 5 years". In 2019, the number of patients on the American kidney waitlist was nearly 150,000. 9.3% of those, or 8,363, were between the ages of eighteen and thirty-four; over thirty-two thousand were between the ages of eighteen and fifty. The average wait time for a new kidney from a stranger is approximately five years, which at least is a nice round number for these statistics. In short: we need more kidneys!

What's the end solution?

With current technology? Hoping somebody gives you one of their kidneys.

Survival rate

Happily, every organization in America that is directly involved with any organ donation (within the bounds of the law) is registered with the Organ Procurement and Transplantation Network. Member hospitals that want their patients to receive an organ are required (sec 121.5(b)) by the department of Health and Human Services to list said patients on the OPTN  –  and you'd have to be crazy to not list them on the national waitlist anyway. The organization is required (121.11(a)(1)) to list everyone who needs a new organ, everyone who's giving an organ, and (121.11(a)(2)(i)) everyone who just got a new organ. Coup d'oeil, it looks like the network quite succeeds in this, claiming to list every legal "organ donation and transplant event" on US soil since 1987, which gives us lots of lovely lovely data. 

(I can only assume that there are some black-market transplants going on that aren't listed, but surely we can trust the accuracy of at least the number of people on the OPTN waitlist who die, since I doubt many renal failure patients are illegally buying a kidney and then faking their own death.)

UCSF's Kidney Project claims that the five-year survival rate of dialysis patients is (less than) 50%; specifically, 35% for those on hemodialysis (which in turn represent 90% of dialysis patients). In 2019, the deaths per 100 kidney waitlist years were approximately 4.5 (Figure KI 27 in the 2019 OPTN report). By contrast, UCSF's Kidney Project claims that the five-year survival rate of transplant recipients is approximately 80%; and the five-year survival rate of American adults who received kidneys from deceased donors, from 2012 to 2014, was approximately 85% (Figure KI 115, 2019 OPTN report); the same figure for kidneys from living donors was approximately 92% (Figure KI 121). In the period 2008 to 2011, the ten-year recipient survival rate for Americans who got their new kidney from a deceased donor was approximately 66% and the ten-year recipient survival rate for patients who got their new kidney from a living donor was approximately 80%. (Figure 3 in doi 10.1056/NEJMra2014530.) A 2012 OPTN report appears to say (pg 30) that deceased-donor recipients tend to live an average of more than five years without the kidney failing. Looking at these numbers, it appears that receiving a kidney doubles your odds of surviving for five years to about 80%. Furthermore, it's quite possible that one can go from a greater than even chance of dying within five years to a two-out-of-three chance of surviving ten years: an average life increase of perhaps possibly maybe approximately (.66*10 – .35*5) four years. Note, of course, that it's much better to get a kidney from a living donor than from a deceased one.

Potential confounders include the possibility that patients more likely to survive for a long time are moved to the top of the waitlist. In ranking the waitlist, OPTN calculates the patient's life expectancy, given receipt of new kidney, relative to all other dialysis patients (pg 131), and prioritizes those patients with the lower expectancy (pg 134). (Please note that a lower EPTS score means survival for longer if they do get a kidney (pg 131).) However, if they are facing imminent death that can be prevented only by a new kidney, they are considered to have Medically Urgent Status (page 132), which moves them to the top of the list (pg 135). (Please note also that such prioritizations are within groups formed by whose blood type is compatible with which kidneys.) In short, it looks like this confounder isn't a problem, EXCEPT for the profoundly likely possibility that I'm just misreading the algorithm. 

Similarly, a 2007 study claims that, out of those Americans who are awaiting kidney transplant, those who are in the lowest quartile of survival expectancy would probably not live very long even with a kidney transplant, but that the healthiest patients tend not to be on the waitlist in the first place. The study speculates that the number of patients who could really take advantage of a donated kidney is in the region of one hundred and thirty thousand. I do think there would be the usual ethical problems with denying sick people a donation simply because they're very sick; but the QALYs don't lie, do they. (Worryingly, the study isn't very clear on how it calculates life expectancy.) 

Potential lifespan of new kidney

Please note that these kinds of studies tend to compare only those patients who don't die of other causes. As such, they cannot necessarily be used to determine how long a kidney recipient is to survive, as, again, if you're in bad enough shape to need a kidney then you're much more likely to have other medical problems that might also kill you.

A study between 1999 and 2009 of 843 patients getting a kidney from a living donor at a certain hospital in Iran demonstrated a ten-year graft survival rate (ie, the odds of making it ten years until you need to go back on dialysis) of 89.2%. 

According to the OPTN annual report for 2019, in 2009, the odds of avoiding graft failure for transplanted kidneys (ie, the success rate) from deceased donors after five years were ~65%; from deceased donors after ten years about ~52% (KI 88); from living donors after five years, ~85%; from living donors after ten years, ~69% (KI 91).

Between 1999 and 2003, the five-year kidney graft survival rate was, counting only those kidneys which were donated by deceased people to people who were not senior citizens, between 71 and 80 percent for White Americans and Hispanic Americans, and between 51 and 53 percent for African Americans. Counting only those kidneys which were donated by living people to people who were not senior citizens, it was between 78 and 86 percent for White Americans and Hispanic Americans, and between 68 and 75 percent for African Americans. From 2005 to 2008, the average ten-year graft survival for kidneys from deceased donors was approximately 45.7% for White Americans, 33.7% for African Americans, and 48.2% for Hispanic Americans. Annoyingly, the people who made this study don't seem to have averages for Americans or even by race (they break down each race by age group).

A study of 2724 kidney transplants (kidneys with a "potential graft survival time" of over a decade) performed between 1984 and 1997 at the University of Minnesota found that 50% of them continued graft function after ten years. In that study, of the 2724 monitored, 1247 kidneys were from living donors and 1477 kidneys were from deceased donors. There were 1367 total decaders, of which 759 were decaders who had kidneys from living donors and 608 were decaders who had kidneys from deceased donors. (Please note that there is a typographical error in the study: there is an omitted space after "of the 1367 in Era 2," which made it look like there was a success rate of two hundred and twelve percent!) Running the numbers, it seems that kidneys from deceased donors had a ten-year graft survival rate of ~41.1% and that kidneys from living donors had a ten-year graft survival rate of ~61%.

A 2021 NEJM study (doi 10.1056/NEJMra2014530) of American kidney transplant patients says that the ten-year graft survival rate increased by about a quarter from the late nineties to around 2010. In the period 2008 to 2011, the ten-year graft survival rate for kidneys from deceased donors was approximately 53.6%, and the ten-year graft survival rate for kidneys from living donors was approximately 70%. 

Quality of life

There are many potential downsides to getting a new kidney, including depression, sleep problems, and plain pain. The recipient still has to take daily medication and have a lot of followups and so forth, so it's not a magic cure. And the body might reject the kidney (this happens, severely and within a year, about seven percent of the time, says the 2019 OPTN report). Also, Medicare does not guarantee the requisite drugs for transplant kidneys after the first three years.

However, given that most recipients declare it to be better than dialysis, then assuming it's not still a fate worse than death (in which case presumably the patients would have voluntarily gone off dialysis and died via renal failure or a more painless and direct suicide), we can at least use the increase in odds of survival for numbers.

A 1995 study of 269 patients on the kidney waitlist found that the average TTO score for patients on the kidney waitlist was 0.57, and 0.7 for patients who got a kidney and were resurveyed after two years. These very old data would seem to indicate that getting a kidney is worth approximately 1.23 years-as-recipient per year-on-dialysis.

A 2013 survey of 114 Brits who were one year into their new kidneys found average physical quality of living increased by 19%, psychological 8%, and social 11% (according to my extremely tentative math re Table I). These data would seem to indicate that getting a kidney is worth possibly maybe perhaps more or less somewhat approximately 1.13 years-as-recipient per year-on-dialysis. 

A 2015 survey of 476 American kidney recipients found that most of them "reported meaningful improvements in health and lifestyle", but the study didn't do any numbers. (Note, furthermore, that it is difficult to tell a survey that you have poor quality of life if you are dead.)

In conclusion, we have basically no specific numbers, but it seems quite certain that getting a new kidney is essentially never regretted and seems to almost always make someone's life better as well as longer. Note, however, that since it's not a magic cure, the QALYs of a kidney recipient are presumably still less than the QALYs of a perfectly healthy individual. 

Kidneys just lying around

The Washington Post claims that in 2016, "as many as" (though their numerical breakdown seems to mean 'just about') twenty-seven thousand Americans were eligible to donate organs at the moment of their death, but less than half of them actually ended up donating organs at the moment of their death. The Post does admit that they don't know how many of those twenty-seven thousand were ineligible for reasons beyond the obvious –  for example, perhaps a twenty-two-year-old dies of a gunshot to the head twenty feet from the hospital's front steps, but they also have a bloodborne disease  –  but even if half those donors are ineligible, a moderate estimate would nevertheless be that forty thousand organs per year are going to waste. And that's only deceased potential donors! There are millions of Americans walking around right now with kidneys they don't need. 

One study using data from 45 states 2012-2014 (pg 12, methodology on pg 13) indicates that in some areas two out of three probably eligible donors end up not donating for whatever reason. (No state in that study had a donation rate higher than 57%.) 

What could a new philanthropist do?

Lobby!

Opting out

A very simple way to increase kidney donations would be to convince legislators to make posthumous organ donation opt-out. But countries that have switched to opt-out have not consistently shown increased donations. In Brazil it might have made things worse; but in Singapore, Austria, and Belgium it increased available donors by more than a fifth. It can also be difficult or impossible to override a relative's wishes (which is perhaps how we want it). Yet even a small difference could have a big impact; a University of Michigan study estimated that a five percent increase in donation would have resulted in an additional ~3450 life-years for kidney patients. And the majority of Americans are in favor of making it opt-out (pg 111).

Trafficking
More difficult: legalizing kidney commerce could be very cost-effective in that OP wouldn't have to actually pay for any kidneys to help: they could just sit back and let the free market do its work. (The folks in charge of pinching Medicare pennies would undoubtedly be willing to pay for an organ that pays for itself in two years, and the people on dialysis would undoubtedly be willing to pay large sums of money to get off dialysis.) If a charity wanted to help the situation more, that charity could buy poor people kidneys. The big sticking point is: I don't know how much it would cost to legalize kidney commerce. It could take a lot of campaign contributions, a lot of lobbying, and heaven knows how much political capital that could be conserved for more important causes. Paying someone for a kidney is "currently illegal virtually everywhere" (pg 2856), with the notable exception of Iran.

However, a 2017 survey of 2,666 American adults showed that 57% of Americans would be alright with legalizing paying someone a hundred thousand dollars for a kidney even if such legalization resulted in zero increase in total kidney donations. Approximately 65% supported the government paying kidney donors one hundred thousand dollars even if that program resulted in zero increase in total kidney donations. If the government's paying kidney donors thirty thousand dollars apiece resulted in four thousand additional transplants per year, approximately 75% of respondents supported it; if it eliminated the gap, approximately 80%. (By comparison, in general, about ninety percent of Americans are in favor of the general concept of organ donation (pg 21).)

But of course the United States does not do federal medical regulations via direct referendum; this sort of thing depends on not what the general population wants but rather on what their elected Congresscritters desire. Yet, since OP says that money can be quite useful in getting politicians to care about what their voters (appear to) care about, one never does know.

There is also the danger that legalizing kidney commerce would result in people grabbing random pedestrians in alleyways, sawing out their kidneys, and selling them on the gray market. And God knows what kinds of things go wrong when people facing death by renal failure resort to purchasing a kidney from Honest Louie's Discount Organs in Pashluga, Wisconsin. On the other hand, it seems to me like a regulated legal market would make these sorts of pitfalls less prevalent, but what do I know.

It might be more politically palatable to allow the vending of kidneys only for patients with a certain especially dangerous condition. (Compare "Legalize selling organs" to "Allow people with Balthazar's Horrid Wilting Disease to purchase a transplant".) For example, diabetics on the kidney waitlist have an average of more than six deaths per 100 waitlist years, whereas waitlisters with cystic kidney disease have a mortality rate about a third of that (Figure KI 31 of the 2019 OPTN report). 

Technically not compensation

The good news is, if you want to donate a kidney, then all of the direct expenses are covered (usually by the recipient). They just want your kidney! (You're also moved to the top of the waitlist if ever you need a kidney.) Better yet, the Trump Administration ordered that the NLDAC may provide childcare, transportation, and similar expenses, though I don't know how much this works in practice. Hawaii and Minnesota actually require large employers to offer paid leave for donors! Maine and Oregon have similar requirements, though they may only apply to intrafamily donations. Maryland, Pennsylvania, and Wisconsin have similar requirements, though they are rather stingy.

Three years ago, a Congresscritter introduced into the House a bill to try out some "noncash benefit"s, potentially including "health insurance, forgiveness of student loans, a donation to a charity of choice", "funeral benefits", or, say, a new car. The bill was immediately referred to committee and hasn't been seen again. But it does sound more politically palatable than cold hard cash. I expect one would want to do some surveys about that.

OP has already recommended giving hundreds of thousands of dollars to Waitlist Zero in order to reimburse the lost wages of living donors. Although I am not barred, I think that this uses essentially the same rationale as sperm banks do: "We're not paying you for the stuff from your body; you're taking the time to give us stuff from your body for free, and we're paying you for that time."

Guns to heads

Of course, it would be politically unthinkable to mandate posthumous organ donations. This would be contrary to the sincerely held religious beliefs of millions of registered voters (and since most of those people are Christians, the Supreme Court would presumably strike it down as a violation of the Free Exercise Clause) 

Mandating live donations would also be virtually impossible. The average kidney donor is told no heavy lifting for six weeks  –  even with compensation for lost wages, this is a burden heavier than what most people would feel comfortable imposing on their fellow citizens. Not to mention the sheer pain of any major operation, the recovery period, and the minor indignities of, for example, the required full-insert urinary catheter. Politically impossible. It is also my personal prediction that if the US mandated kidney donation except in cases of the donor's medical necessity, then there would absolutely be horror stories where the bureaucracy screws up and removes the kidney that the donor really needs. 

Worse, the best way to get organs from a deceased donor is to take them off life support the moment they technically die, whether or not they're brain-dead; I hardly need point out the potential legal difficulties of this.

The Intimidating Revenue Service

On the flip side, tax credits might be easier. Tax breaks to (help) pay for donor expenses are available for (certain) donors in Arkansas, Colorado, Connecticut, Georgia, Idaho, Iowa, Kansas, Louisiana, Massachusetts, Minnesota, Mississippi, New Jersey, New Mexico, New York, North Dakota, Ohio, Oklahoma, (sort of) Pennsylvania, Rhode Island, Utah, (sort of) Vermont, Virginia, and Wisconsin. 

And you can try soft-shoeing it. Approximately 54% of American adults are registered organ donors; presumably at least another thirty million are in decent enough health to donate but have not signed up. In fact, fifty percent of surveyed Americans who had not registered say (pg 38) that they did want to be a donor! (One fifth of those people said "Definitely".) Given that in some states one may sign up to be a donor via website or app, possibly progress might be made by heavily advertising the most convenient one, or simply setting up booths like they do for voting registration. However, I haven't the faintest idea how much that would cost.

(One JAMA study (doi 10.1001/jamainternmed.2019.2609) argued that the US is too choosy about its donated kidneys, discarding more than twice as many as France does. (I think this is a combination of regulations and recipient choice.) I am totally unqualified to say what constitutes a good kidney, so I will refrain from commenting on this exact issue unless I see some really low-hanging fruit.)

And there are some other complaints about the system that might be easier to fix. One organization claims that a low-hanging fruit is that "OPOs are evaluated on the number of organs procured per donor, which leads to older single-organ donors being overlooked". There is the difficulty of getting the organ to the recipient in time: although modern technology and political cohesion allows us to have a national database for donated organs, the Post says that nearly five thousand organs in 2017 "were recovered but not transplanted," representing "about one out of every eight organs intended for transplant." The 2019 OPTN report says that in 2019, out of all kidneys removed for transplant, twenty percent were not inserted for transplant. 

The main sticking point

The main problem with all this is that the dialysis industry would (further) lobby against it. I have heard that the dialysis industry lobbies against all attempts to further incentivize kidney donation. This would be a significant obstacle, if true.

Also
(You could also try to incentivize heart transplants, which for obvious reasons are generally done only using posthumous donors. Right now, approximately thirty-four hundred people are on the waitlist for a heart. The fatality rate of adults waiting on the waitlist for a new heart is approximately 8 deaths per 100 years (Figure HR 30, OPTN 2019 report). The five-year rate of survival among heart recipients (2012-2014) is approximately 79% (Figure HR 70). Heck, the average posthumous donor donates three organs, so increasing any organ donations would probably increase others –  I doubt many people say "Well, I'll donate my heart, but not my kidney.")

Who is already working on it?

OP has previously given some funding to Waitlist Zero, an organization that attempts to increase kidney donations. They're currently trying to get New York to pay all the expenses of donation, and are trying to get the federal government to do anything (success appears very limited). They also want to do some awareness/education campaigns, but don't appear to have launched any pilot programs yet.

You also noticed the Congressional bill above.

Is it worth the resources?

Suppose that, by some method or other, you successfully convinced the US Congress to make some sort of law that successfully increased the number of posthumous kidney donations by ten percent for one year. (In 2019, there were 11,152 deceased kidney donors.) Our above rough estimate for the years added per kidney donation is four years; let us discount them by twenty-five percent given the inconvenience of life as a transplant recipient. An average of three years per recipient, for 1115 recipients, is 3345 QALYs added to the world. Is this thirteen hundred times as efficient as just giving poor people money? Unlikely! Unless you have some very efficient lobbyists. If you want such an intervention to average less than $100 per QALY, then you would have to spend less than $334,500 on the measure, which might not be much when it comes to Washington. On the plus side, if a statute passed, it could potentially cause a permanent increase in donations, which using the above estimate could provide 3345 QALYs per year; if this lasted for a decade, then spending even three million dollars on it would work out to less than $100 per QALY.

Sources of uncertainty

Boy, where to begin? I took AP Statistics in high school, have never studied medicine, and work in the humanities. I think I have explicitly noted the specific areas of uncertainty, but I'm uncertain whether I missed some. I still don't understand how exactly a DALY works as opposed to a QALY? Also, I don't have great data on the odds of dying on dialysis, which is worrying. And I don't know what else is being done about this problem. Really you guys should just take this as a couldn't-hurt-to-suggest thing.

Conclusion and summary

Some Americans don't have enough kidneys to live; others have extras. Potential interventions to rectify this imbalance depend on messy, messy politics, and as such has a cost which is entirely opaque to me. However, some extremely rough calculations indicate that a very mildly successful political intervention could save thousands of QALYs in one blow, so depending on OP's political influence it could be a rather worthwhile pursuit.

Conflict of Interest Statement

While a college student, I attempted to donate my kidney to a random (well, technically I requested that they make an effort to give it to someone who wasn't a neo-Nazi) stranger. I went through a long and inconvenient battery of tests and interviews to do so. I failed the very last interview because the psychiatrist thought it would be too great a sacrifice for me to make. I intend to donate my kidney once I am firmly settled into my white-collar career. I am also registered to be a posthumous organ donor. All of that was an influence on my deciding to spend several hours of my life writing this.