simon haeder teaches in the School of Public Policy at Penn State.
Published July 30, 2020
By most every metric – and soon, we all hope, by the pace of development of a Covid-19 vaccine – technological progress in medicine has accelerated in the past few decades. Many pathologies that relatively recently amounted to death sentences, or, at best, chronic morbidity, can now be cured or held at bay. Our increasing ability to transplant human body parts with a high probability of success certainly falls into this category. In recent years, transplantation has progressed to hands, faces and even penises and scrotums. Yet, while we have been largely able to figure out the technology, candidates for transplants too often die waiting because the supply of compatible organs is inadequate. And, at least in some cases, the barrier is not a literal scarcity. What gives?
Here, I explain how the U.S. organ transplant system, particularly as it relates to kidneys, has been constrained by an ethos built around altruistic donations. The chasm between what could be done and what is being done is wide and will likely continue to grow. I think it is time to rethink the unthinkable and – with appropriate safeguards – venture into the generally unspoken: the “commodification” of organs.
Transplant centers have been known to game the system by misrepresenting the urgency of specific patients’ transplant needs.
The Path to Now
For most of human history, chronic kidney disease was a one-way ticket across the River Styx. This began to change with the invention of the hemodialysis machine in the late 1940s. Improvements to the equipment made it practical to open the first U.S. dialysis clinic in 1962. At about the same time, surgeons began transplanting kidneys. Yet despite these developments, few Americans suffering from chronic kidney disease saw immediate improvements in their lives.
For one thing, both dialysis and transplantation remained expensive and lacked a dedicated source of funding, since most insurers did not cover “experimental” therapies. Dialysis clinics were driven to establish what really did amount to death panels to decide which patients would obtain treatment.
Transplants, for their part, were severely curtailed by the lack of availability of viable organs. Half a century ago, the threat of rejection by the new host’s immune system mostly limited transplants to donations from close relations – ideally, identical twins. Meanwhile, though transplants remained small in number, they raised big ethical and legal issues ranging from property rights in cadavers to the extent to which government could and should make demands on dying potential donors and grieving families.
The invention of respirators and heartlung bypass machines gradually expanded the potential supply of organs by allowing hospitals to keep organs viable after patients died. Yet this created a new challenge: if physicians must wait until the heart and lungs stop to declare death, the organs may not remain viable. This led to the development of the concept of brain death, a complex diagnosis that to this day eludes consensus definition among professionals. But with transplant candidates whose time was running out, there was no way to avoid confronting the intangible.
Washington asserted the government’s interest by making grants to a small number of hospitals to create the infrastructure to procure kidneys. Grants supported the establishment of a small number of private dialysis centers, while dialysis also became available through the gigantic government-financed VA hospital system. Yet the amount of money involved was but a drop in the ocean.
That was about to change. Lobbying by patient-advocate groups culminated in 1972 amendments to the Social Security Act that, almost without precedent, guaranteed treatment to sufferers of a single malady: dialysis for end-stage renal disease that would help keep the window open for a subsequent transplant. Yet despite the federal commitment, kidney transplants would not become a common procedure until the development of more effective immunosuppressant drugs in the 1970s and 1980s.
With organ rejection and financing troubles largely mitigated, one major barrier remained: there still were not enough organs of any kind – but particularly not enough kidneys. Stakeholders were not sitting by idly. By now, a number of informal organ-sharing networks, supported by further federal grants, had developed among transplantation centers to rationalize organ allocation. One such nonprofit network based on the East Coast, known as the South-Eastern Organ Procurement Foundation, established itself as the leader.
Spurred on by the media and advocacy organizations, Congress eventually developed a more coherent national policy – after all, it was already footing the bill. The National Organ Transplantation Act of 1984 provided assistance to organ procurement agencies and set up a task force to hash out a policy on transplants. Crucially, the act created the Organ Procurement and Transplantation Network (OPTN) to maintain the national registry for organ matching, a job delegated to the private sector. Finally, it banned the sale of organs, a prohibition maintained to this date.
The contract to run the network was awarded to the United Network for Organ Sharing (UNOS), a nonprofit that had evolved out of the aforementioned South- Eastern Organ Procurement Foundation. The task force report reemphasized the view that donations should only be motivated by altruism. The governance of the system was thus set by the late 1980s.
Congress subsequently strengthened the emerging institutions by requiring membership in OPTN in order to perform transplants, and by requiring hospitals to follow OPTN rules or risk losing all Medicare and Medicaid reimbursements – even those unrelated to organ transplants. UNOS, whose membership includes a diverse set of stakeholders ranging from health care providers to hospitals to patients to the National Kidney Foundation, quickly took advantage of its leverage as the private regulator of organ transplantation policy. This included setting the standards for center staffing, provider qualifications and facilities. Note that none of these far-reaching quasi-regulations was issued via the standard federal rulemaking process.
Supporters of this not-quite-government administration system see it as the best of both worlds, avoiding political and bureaucratic entanglements while harnessing the expertise of stakeholders. Critics, on the other hand, have raised concerns about its lack of transparency and firm basis for judicial review.
The Nitty Gritty
Since its inception in the 1980s, the mechanics of the U.S. organ transplant system have largely remained static. After registering for the waiting list, needy individuals are entered into a nationwide database that is connected to a corresponding database for organs as they become available. Patient priorities are ranked by a sophisticated algorithm based on the UNOS-established criteria for each organ. In addition to weighing medical factors, the allocation system for kidneys takes into account such considerations as waiting time, immune system compatibility, pediatric status, distance to the hospital and survival benefits. Patients’ surgeons make the final decision whether to move forward. If a surgeon elects to wait, the organ is offered to the candidate ranked below, and so forth.
While seemingly steeped in science and expertise, organ allocation has not been without controversy. This should not come as a surprise, as donations can be zero-sum games: if Peter obtains the organ in question, Paul goes without – and he might die as a result. It should be equally unsurprising that the vast inequities of American society in general and the health care system in particular have crept into organ transplantation.
For one thing, suspicions of racial and ethnic bias shadow allocation decisions. Moreover, individuals with money and expert help can register with multiple transplant centers to increase their probability of obtaining an organ. To make things worse, transplant centers have been known to game the system by misrepresenting the urgency of specific patients’ transplant needs.
Allegations of favoritism were front and center in the high-profile case of Robert P. Casey, then governor of Pennsylvania, who received a heart-liver transplant after only one day on the waiting list, and in the case of Mickey Mantle, who had to wait just a few hours longer. More recently, the 2013 case of Sarah Murnaghan, who suffered from cystic fibrosis and by virtue of her age (10 years) was initially denied access to new lungs, raised questions about both the allocation of organs to children and UNOS’s lack of accountability to the public. Yet, all things considered, the hybrid regulation system has proven to be a pretty good steward of the nation’s transplant organs. At the very least, it is highly questionable whether a fully government-run entity, subject to lobbying and political whims, could do any better.
The Quest to Procure Organs
Surveys show that well over 90 percent of Americans support the concept of organ donation. That’s just as well, since a large pool of potential donors is crucial: only three in 1,000 deaths yield organs that are candidates for donation. Yet public support in the abstract translates incompletely into action; tens of millions of adults are not registered as organ donors.
With the supply of organs from cadavers well below demand, the organ transplant system has increasingly turned to living donors. Obviously, this practice is mostly limited to kidneys – pretty much everybody can make do with just one of the two they have – and overwhelmingly relies on donations by close relatives. Creative approaches to maximize live donations by utilizing so-called paired exchanges or donor chains have made a big difference. Here the formidable problem of local organ incompatibility is overcome by effectively broadening the pool. (Incidentally, a Stanford University economist named Alvin Roth won a Nobel Prize in 2012 largely on the strength of his pioneering algorithms for managing kidney donor chains.)
Maximizing the numbers of donors is impeded by a number of challenges. For one, the most suitable donors – young and healthy individuals – often refuse to think about their own deaths and hence put off registration until it is too late. Moreover, a large number of Americans presume (usually falsely) that their religions discourage them from donating. Even donations from individuals who have registered are problematic because family consent is usually sought, and is often difficult to obtain, before removing organs.
With the supply of deceased donors well below demand, the system has increasingly turned to living donors. Pretty much everybody can make do with just one of the two kidneys they have.
One of the main reasons families refuse organ donation is that the potential donors failed to communicate their preferences before death. Another barrier prevails among racial and ethnic minorities, who too often believe that whites get preference as organ recipients. Last but not least, a surprising number of people worry that the prospect of reaping organs gives their physicians an incentive to prematurely pull the plug.
Yet another issue exacerbating organ shortages is, ironically, gains in unrelated technologies. Safer cars have reduced highway deaths among prime potential donors – particularly young ones. Then, too, improved stroke care and prevention of hypertension have reduced the availability of organs undamaged by wear and tear.
The United States has done well compared to other industrialized countries in sustaining donation rates. The catch here is that better than other countries isn’t good enough. Today, 15 percent of Americans suffer from chronic kidney disease. Of these, roughly 800,000 have progressed to end-stage renal disease, where kidney function has been reduced to 10 to 15 percent of normal capacity. Most of them – half a million or so – require regular dialysis, and eventually a transplant, to survive.
Dialysis sustains life, yet it is far from a perfect substitute for normal kidney function. It is a time-consuming process that often leaves patients fatigued, with increased risks of infection and sepsis, and subject to a number of other ailments. What’s more, dialysis is very expensive, with an average annual cost of $90,000 that is largely underwritten by government. In 2018 alone, Medicare spent $114 billion on chronic kidney disease patients, with the end-stage renal disease population, which makes up a meager 1 percent of the total Medicare population, accounting for more than $35 billion. And this figure does not include spending by private insurers or patients’ out-of-pocket payments.
Kidney transplantation is superior to dialysis in every way. It not only increases the quality of life for patients, but also substantially decreases long-term costs of care for patients with ESRD. All told, a kidney transplant is worth on the order of a half-million dollars to kidney disease sufferers and those who share the cost of dialysis. Transplants are also head and shoulders above dialysis in terms of life expectancy. While the five-year survival rate for end-stage renal disease is 35 percent, it increases to 97 percent for those receiving transplants.
One unsurprising result of the explosion in end-stage renal disease is that kidney procurement has consistently failed to provide enough organs for transplants. The waiting list for kidneys has ranged from 76,000 to 87,000 over the past decade, as more than 20,000 individuals are added to the rolls each year. And with demand increasing at around 10 percent annually, a lot of those in need are just out of luck. On average, 13 people die each day waiting for kidneys (and another seven die waiting for other organs). It is highly unlikely that more effective appeals to the kindness of others will solve the shortage long term. It certainly hasn’t so far.
Of course, in health care, one person’s cost of treatment represents someone else’s income. And no matter whether it’s dialysis or transplants, chronic kidney disease is a profitable endeavor. The two biggest dialysis providers, DaVita and Fresenius Medical Care, generate almost $30 billion in annual revenue combined. Prescription drugs are also a hefty part of the treatment bill: Medicare Part D spending is about $5,000 annually for chronic kidney disease beneficiaries and exceeds $13,300 for those with end-stage disease.
Transplants, while more cost-effective than dialysis, are by no means cheap, either. The average billed for a kidney transplant is more than $400,000 – still a bargain compared to $1.4 million for a heart, $810,000 for a liver and $1.2 million for a double lung transplant. In short, treatment for kidney failure in the United States, like all other health care for the chronically ill, is big business.
Donation, Conscription or Sale
If we’ve nearly maxed out on voluntary donations and demand is rising inexorably, what are the alternatives? One may be to push a little on the concept of altruism.
A first target is the slippage created in obtaining consent from families. Medical providers don’t like to ask, but there’s every reason to make the asking mandatory – and to enforce it. Second, individuals could be legally required to state their preferences while alive. Or, better yet, make registration for donations an “opt-out” system in which everyone is presumed to have given consent unless they take the affirmative step of declaring their unwillingness to donate.
Some countries – Israel, for one – make living donation more attractive by offering preferential treatment should a donor need an organ themselves down the road. All told, though, none of these approaches appears to have the potential to fully meet growing long-term demand.
Another avenue for increasing supply is to break the commitment to voluntary donation, making donation from cadavers mandatory – a final obligation to society. This would certainly make a difference, though it would not be an easy political sell in a country in which individual liberty is seen as a higher value than the commonweal. Either way, even harvesting every potential organ in this fashion would likely fall short.
This leaves the third option, which for want of a better word is called commodification. The weakest forms of commodification solely focus on offsetting the expenses of live donors, who, in addition to risking morbidity and even death, face the hardship of losing incomes from lost work days or increased outlays for child care while they are on the mend. A precedent here that ought to make this sort of reward more palatable: most states permit prospective adoptive parents to cover the living expenses of birth mothers while they are pregnant.
Then, one might dip a toe in the fiscal-incentive waters by providing modest common- sense rewards for donation – for example, a contribution to funeral expenses to families consenting to organ harvesting. Or – and this is a big “or” – one might go the full monty, offering willing donors, dead or alive, the full net social benefit of their organs in the form of cash.
The devil, as always, is in the details. But the idea of some sort of remuneration has been kicking around long enough to have generated creative proposals to deal with many of the logistical challenges. For example, offering relatives no more and no less than the market price for an organ right after a loved one has succumbed seems both crude and cruel – and also not fair to the deceased donor, who could have used the cash before death. It is also inefficient, because the clock would be ticking on the viability of organs while the relatives decide.
But forward-looking institutions would mitigate these problems. Some have suggested arrangements like mutual insurance pools in which the payout for cadaver donations would be determined by multiple organ bidders over some period of time. Others have proposed the creation of a futures market for donations, in which potential donors could make their decision in their lifetimes. Most of these proposals envision government regulation to enforce contracts, although alternatives like self-regulating futures exchanges are plausible.
Concerns about exploitation of the poor also don’t hold up well under scrutiny. A market for organs would disproportionately benefit the poor by creating a new source of income.
The very idea of putting prices on body parts infuriates many by besmirching the ideal of altruistic donations. Of course, the altruism in the current transplantation process stops with the donor, the recipient and their families – everyone else is getting paid. Moreover, proponents rightfully point out that we already allow compensation to individuals for donations of blood plasma and for providing surrogate motherhood services, so the expansion to organs would be a change in degree only.
Concerns about exploitation of the poor also don’t hold up well under scrutiny. A market for organs would disproportionately benefit the poor by creating a new source of income. And even if that notion seems overthe- top Dickensian, the fact remains that the poor who would never be willing to sell organs might still indirectly benefit from a change in the system that increased the availability of organs and thus made transplants less expensive. In any case, drawing the line here seems a bit hypocritical. We have long been perfectly willing to exploit the poor by paying them to enroll in potentially dangerous prescription drug trials – and, most importantly, by encouraging them to put their lives on the line by joining the military.
Allowing sales of organs does conjure some repellent cases. There are strong indications, for example, that China has been relying on executed prisoners to restock its organ supply – or to line the pockets of corrupt officials engaged in trafficking. But the fact that some people and some nations debase the miracle of transplantation doesn’t seem a good enough reason to claim the moral high ground for an altruism-based system that leaves thousands to suffer and die unnecessarily every year.
Set aside ethical considerations for a moment. As suggested earlier, opponents raise an important question about the unintended effects of commodification of organ supplies. Would altering the incentive structure by introducing monetary elements discourage some donors?
If one considers this a significant drawback, the issue might be addressed by limiting commodification to narrow categories, like covering funeral expenses, that are less likely to change attitudes toward voluntary donations. Of course, truly altruistic individuals should not be affected by the ability of others to sell their organs, because they could still donate their organs for free – or donate their remuneration to charity.
To Pay or Not to Pay
It’s worth repeating: the gap between supply and demand for organs isn’t going to be closed by some clever change that makes the current altruism-based system more efficient. While there is still much that can be done in this regard – changing the current opt-in system for donors to an opt-out system is a big one – there is no true fix in sight. Covid-19 will only exacerbate the shortage in the near term, reducing voluntary donations and increasing the demand for organs by recovering victims of the virus.
Nor do I believe we could expect a straightforward meeting of the minds sometime down the road, in which goodwill and rationality prevail to produce some sort of well-regulated commodification. A lot of people with religious or ideological objections flat out reject the utilitarian view that the end of saving lives justifies the means.
Adding to the opposition to commodification is the reality that any change that sharply increases the supply of organs would create losers as well as winners. We don’t know how dialysis providers would respond to any sort of commodification proposal, but we can guess. The two largest providers have not in the past shied away from making their views known: they’ve spent $75 million in campaign contributions and lobbying since 2011.
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Arguably the best hope for meeting future demand is the sort of incremental reform discussed above, which introduces commodification in an unthreatening way and slowly modifies public opinion. For all the hand-wringing about the difficulty of institutional reform in America, it does happen, and sometimes fairly rapidly – think of the success of the movements for marijuana legalization and gay marriage. And in the case of the transplantation system, change has natural allies in the growing numbers who will need transplants and won’t be able to obtain them.