It is ten past two in the morning and Dana is not asleep. The house is the kind of quiet that only happens when everyone you love is breathing in the next room. Her brother has been on dialysis for fourteen months. Tonight, for the first time, she typed the words into a search bar that she had been circling for weeks: can a healthy person give a kidney. The screen answered in pamphlets and forums and one furious comment thread. She closed the laptop. She opened it again. She has not told anyone she is looking.

Before we give you a single statistic, we want to do something unusual for a guide like this one. We want to tell you where you are.

You are standing in a particular year

It is 2026. In the United States, roughly 95,500 people are waiting for a kidney, and the number has not meaningfully fallen in a generation. Each of them is a person with a Tuesday and a favorite song, and each is, in a very literal sense, on a clock. Kidney failure is the one organ failure that medicine has learned to postpone with a machine. Most people on in-center hemodialysis are connected to one for roughly four hours, three days a week, for as long as they wait. That is a life lived in the margins of an appointment schedule. It is survivable. It is not the same as living.

The year matters because the system is changing under you. The national network that matches organs was reorganized by Congress and the federal government in the early 2020s. Payment models have been rewritten to give hospitals and dialysis providers different incentives. Living-donor protections are being debated in state legislatures and in Washington. A decision made in 2026 sits in a different legal and financial landscape than the same decision made in 2006, and the pamphlet you were handed may be older than your coverage.

You are standing in a particular place

Geography is not neutral here. Which transplant center you live near, whether your state offers a tax benefit to donors, whether your employer is covered by a leave law, whether your insurance counts a donor’s recovery as a medical event or as a pre-existing condition: all of it varies by zip code and paycheck. Two people with the same kidney, the same generosity and the same blood type can face wildly different bills.

The place matters in a second way. You are standing inside a system, not merely a hospital: federal agencies, a national matching network, transplant programs, insurers, dialysis corporations, state legislatures, patient charities, and a rising ecosystem of paired-exchange registries. Each of them has a job, and each has incentives. The next chapter draws the map, because you cannot navigate a country you have never seen.

You are standing in a particular body

You have two kidneys, and you have probably never thought about them. That is the paradox of the organ: its health is invisible until it is the only thing that matters. A living donor makes a choice that almost nothing else in medicine asks of a healthy adult: to accept a real, permanent, small-but-not-zero risk, with no health benefit to themselves, for another person’s sake. Surgeons call it the exceptional case in which the principle of “do no harm” is knowingly bent, and the bending is justified only by the donor’s free and fully informed choice. Everything in this book is, in the end, about the word fully.

If any of this sounds like you

People arrive at this decision from many different directions, and the feelings are older than the facts. You may recognize yourself in one or several of these:

The one who always says yes. You are the person your family calls. Yes is automatic, and you are not sure you are choosing so much as obeying a reflex you have had since you were nine. The one who is terrified and ashamed of it. You want to help and you are afraid of the operation, of the scar, of dying, of living differently, and you think the fear makes you a coward. It does not. It makes you accurate. The one who feels nothing yet and is worried about that. The decision is intellectual, the stakes feel abstract, and you wonder what it says about you. The one who was asked, and cannot say no. A relative has made the ask, directly or by silence, and refusing feels like a verdict on love. The stranger. Nobody asked. You read something once, and you cannot put it down. You may be the most curious and the most scrutinized person in the whole system, and you deserve to be treated as neither a saint nor a suspect.

All of these are legitimate places to begin. None of them is a qualification. The rest of the book exists to help you move from where you are to what you actually want, with the evidence in front of you.

1. Waiting-list and transplant counts: Organ Procurement and Transplantation Network (OPTN) national data, optn.transplant.hrsa.gov; figures are a 2026 snapshot and change daily.
2. Typical in-center hemodialysis schedule (about three sessions per week): National Institute of Diabetes and Digestive and Kidney Diseases, niddk.nih.gov.
3. Informed consent as the ethical basis for living donation: OPTN living donor policies (Policy 14) and the transplant-ethics literature; see Chapters 6 and 19.

A hospital administrator, a dialysis nurse, a congressional staffer and a kidney donor sit in the same room only once a year: the room is a conference hall, the occasion is a panel, and none of them has ever seen the whole machine. Each describes the part they touch. The audience, mostly patients, realizes slowly that no one on the stage can draw the entire thing on a whiteboard. Someone should. This chapter tries.

To an individual, the living-donor process feels like a series of appointments. To a policy analyst, it is a market-shaped system with a government-run center of gravity, no single owner, and a handful of well-resourced industries that depend on how it works. Understanding it does not require cynicism. It requires seeing who is paid, who is accountable, and who is absent.

The actors, plainly

The patient and the donor. They are the reason for the system and, by design, its least powerful members. They hold the rare asset (the organ and the consent) but little institutional information. The transplant program. A hospital-based team of surgeons, nephrologists, nurses, social workers and coordinators. Programs are certified by the federal government, are measured on outcomes, and must follow national living-donor policies. Each also operates inside a hospital with a budget. The independent living donor advocate. Required by federal policy to be separate from the recipient’s team, this person exists for one purpose: the donor’s interests. How well the role is staffed varies a great deal.

The OPTN and its contractors. The national network that develops the rules of allocation and living-donor safeguards under federal oversight, with contractors that have been reorganized in recent years. The SRTR. The registry that analyzes outcomes and publishes program-level performance. HRSA and CMS. The two federal agencies that sit above it all: one oversees the network, the other certifies hospitals and pays most of the bills. Congress and the states. Congress wrote the foundational statute and sets the money; states write the tax credits, the leave laws and the discrimination protections that decide whether a donor is financially safe.

Payers. Because the recipient’s insurance, usually Medicare, covers the donor’s evaluation and surgery, a donor is financially entangled with someone else’s coverage in ways that are rarely explained. The dialysis industry. A small number of large companies provide most U.S. dialysis; a successful transplant ends a patient’s time on the machine and, with it, a source of revenue. We do not allege bad faith. We note that the incentives are worth a question, and Chapters 15 and 16 ask it. Paired-exchange registries. Networks that let incompatible pairs trade, creating chains that can start with one stranger. Patient organizations and advocates. From national charities to small volunteer groups, the ones who hold hands in the waiting room and, occasionally, testify.

Where the flows go

Three flows define the ecosystem. Information moves from the program to you, mostly in the form of consent documents and a coordinator’s time. Money moves from payers to programs, with the donor often reimbursed late, partially, or not at all for the incidental costs (travel, lost wages, childcare). Accountability moves, in theory, from the programs up to the federal agencies and back down in the form of audits and rule changes; in practice it moves slowly and rarely reaches the individual donor. If you remember one sentence from this chapter, make it this: the person who bears the most risk has the least institutional voice.

What a healthy ecosystem would look like

A system that served donors well would make the donor’s advocate truly independent, publish long-term donor outcomes by program, reimburse the full financial cost of donating up front, protect donors from insurance and employment penalties by federal law, and treat paired exchange as a default rather than a rescue. None of these is a fantasy; each exists somewhere in the world or in fragments here. The gap between the fragments and the whole is the subject of Part VI.

1. OPTN structure, contractors and living-donor policy: optn.transplant.hrsa.gov; HRSA OPTN Modernization Initiative materials.
2. National Organ Transplant Act, Pub. L. 98-507 (1984); Medicare ESRD entitlement, Pub. L. 92-603 (1972).
3. Program certification: CMS Conditions of Participation for transplant centers, 42 C.F.R. Part 482 Subpart E.
4. Counts: OPTN national data, 2025; verify current figures at the source.

Marcus has made the decision four times. He made it in the car after the phone call. He unmade it in the shower. He remade it when his niece held up a drawing of the whole family, with Uncle Ray in the middle and a small, careful kidney drawn on his side like a medal. He unmade it again at the pharmacy, reading the side-effects on an unrelated bottle. He tells no one that what frightens him is not the operation. It is how calm his body feels about a thing his mind cannot hold still.

Every decision about donation is, underneath, a decision about three old human subjects: death, meaning and belonging. Medicine rarely says so. The evaluation asks about your creatinine and your blood pressure. It does not ask what you believe about your own finitude. But the people who go through this process, and the people who regret it, tend to remember the existential questions long after they have forgotten the lab values.

Death, the quiet participant

A living donor is asked to take a small risk of dying and a larger risk of living differently. The statistics are reassuring: the perioperative risk is on the order of a few per ten thousand, and most donors live long, healthy lives. But the mind does not weigh three in ten thousand the way a spreadsheet does. It weighs it against the people who depend on you. It weighs it against the fact that you have never had a reason to think about it. Psychologists describe this as mortality salience: when we are reminded of death, we cling to our values and our tribes, and sometimes to our rescue fantasies. A decision made at the peak of mortality salience, in a hospital hallway or the week after a relative’s diagnosis, deserves a second look in daylight.

Meaning, the strongest and most dangerous motive

Many donors describe their gift as the most meaningful thing they have done. That is a real and, for most, an honest finding: surveys of donors generally report that a large majority are glad they did it and would do it again. But a meaning-driven decision has a shadow. If your sense of self depends on being the one who gives, then a rejection (a failed crossmatch, a medical exclusion, a recipient who declines) feels like an erasure. And if your life is already short on meaning, donation can become a project you are asking a body part to carry. A mature program will ask what happens to you if the answer is no. A mature donor asks it first.

Belonging, the pressure no one names

Families are the main source of living donors, and families are also where the quietest coercion lives. A request can arrive as a plea, as a joke, as a long silence at a holiday table, or as a relative who has simply started to look at you for a beat too long. The role of the independent advocate is to give you a way out that does not cost you your place in the family: the right to say no, to withdraw at any stage, and to have the program say, on your behalf, that you are not a match, without ever disclosing that you changed your mind. Use that right if you need it. It exists because the people who built the safeguards knew how this goes.

Four honest questions to take outside

First: if no one would ever know I did this, would I still do it? The answer is not a test, but it tells you whether the audience is part of the motive. Second: what am I most afraid of, and is that fear about the surgery or about something older? Third: how will I feel if the recipient does not do well, or does not thank me, or goes back to the habits that damaged their kidneys? Many donors say that this was the hardest, and least discussed, part. Fourth: who will take care of me, and am I willing to ask? Donors are usually the caretakers. The recovery asks them to switch roles.

Meeting yourself in time

One more thing. Time shapes this decision in a way that is easy to miss. The person on the waiting list is living in urgent time: months, dialysis sessions, a clock they can hear. The donor is asked to decide in human time: the pace of a life that has to be reorganized, a body that has to be examined, a family that has to be consulted. These two clocks do not run at the same speed, and a good process refuses to let the first one bully the second. Take the time you need. If anyone, including us, tells you that you must decide this week, ask them who benefits from the rush.

If you need support now

This guide is not therapy and its authors are not clinicians. If thinking about this decision, or about anything else, is making you feel overwhelmed, hopeless or unsafe, please reach out to a mental-health professional or your primary-care clinician. In the United States, you can call or text 988, the Suicide & Crisis Lifeline, at any hour. If you are in immediate danger, or someone is, call 911. Transplant programs also include social workers and psychologists whose job is to talk with potential donors; ask to speak with one at any point.

1. On donor-reported outcomes and quality of life: a substantial literature exists, including systematic reviews in transplant journals. In general, most donors report positive experiences, with a minority reporting psychological or financial difficulty; consult recent reviews and your program’s own data.
2. Mortality salience: terror management theory (Greenberg, Pyszczynski and Solomon); applied here only as a lens, not as a clinical claim.
3. Independent living donor advocate and donor right to withdraw: OPTN Policy 14 (living donation) and CMS transplant program requirements.
4. 988 Suicide & Crisis Lifeline: 988lifeline.org.

Picture a spreadsheet nobody wants to open. One column holds names. Another holds dates: the day each person was listed, the day each began dialysis, the day each last felt like a person with a long future. A third column, the one the system never prints, holds a single number per row: how many nights remain on a machine before something in the body gives out. The spreadsheet is a composite, invented for this book. The people it stands for are not.

Start with what we can count. As of July 2026, 109,817 people were on the national transplant waiting list, and about 95,492 of them were waiting for a kidney, with another 2,353 waiting for a kidney and pancreas together.¹ Kidneys are roughly 85 percent of everything people are waiting for. For decades the headline estimate attached to the list has been that seventeen people die each day waiting for an organ.² The number moves a little with the year and the method, but the shape never changes. The list is longer than the supply. People age, sicken, and die inside the gap.

Now count what the system produces. In 2025 the United States performed 49,064 organ transplants, the fifth consecutive record.³ It is a staggering achievement, and every one of those operations was a life changed. Inside that total sits a quieter number: 7,237 people became living organ donors in 2025, a three percent increase over the prior year. Living donors made possible 6,521 kidney transplants and 709 liver transplants, the latter up 17 percent.⁴ Roughly one in seven transplants in this country now begins with a person who walked into a hospital healthy and walked out with less of themselves, on purpose.

Why the living matter more than the arithmetic suggests

If the aim were only to add organs to the pile, a living donor would look like a rounding error beside a deceased donor, who can supply several organs. But the case for living donation is not about quantity. It is about quality, timing, and the structure of the queue.

A kidney from a living donor generally begins working sooner and, on average, lasts longer than a kidney from a deceased donor. The comparison is not perfect, since living donors are carefully selected and recipients are matched in ways that favor good outcomes. Nonetheless the pattern is consistent across decades of registry data. The surgery can also be scheduled. Planned transplantation allows a patient to avoid or shorten time on dialysis, which carries its own mortality and its own erosion of a life: the thrice-weekly chair, the fluid limits, the exhaustion that follows. In the language of the field, a preemptive living-donor transplant is the best outcome available.

There is a second, less discussed effect. Every person who receives a living-donor kidney leaves the deceased-donor waiting list, or never joins it. That advances everyone behind them by one place. A living donor is therefore a gift to the stranger as well as to the intended recipient, a point to which this book returns.

The decline nobody put on a poster

For all the progress, living donation has not been a story of steady growth. The number of living kidney donors in the United States peaked in the mid-2000s, fell for years, and only recently began to recover; by 2023 the Scientific Registry of Transplant Recipients reported 6,226 living kidney donors, still well below the earlier peak.⁵ The 2025 totals suggest a rebound, and that is genuinely good news. But it is worth asking why a gift that medicine has refined for seventy years was shrinking in the first place. The answers are not mostly medical. They are financial, legal, logistical, and cultural, and they are the subject of the chapters ahead.

Three ways to read the same list

As a patient, the list is a clock. Each month on dialysis changes your health, your finances, your plans. The time you wait is not neutral; it is spent.

As a potential donor, the list is a question that finds you, usually through someone you love. You are asked, directly or by the silence in the room, whether you would be willing to do something extraordinary. What nobody tells you is that almost every step of what follows is governed by federal law, national policy, and state statutes you have never read.

As a citizen, the list is a ledger. It records how a wealthy country decided to organize a scarce, life-saving resource, and whom that organization favors. It shows where the rules reward courage and where they quietly punish it.

This book is written for all three readers at once, because the same facts mean different things from each chair.

What this chapter has not told you

It has not told you whether you should do it. No chapter in this book will. The Cold Ischemia Foundation takes no side on any individual decision to donate. We take a firm side on how the decision should be made: freely, with full information, with an independent advocate, with protection from financial harm, and with a system that keeps its promises afterward. Everything that follows is an attempt to hold that standard against the facts.

1. Organ Donation Statistics, organdonor.gov (waiting-list counts as of July 30, 2026): organdonor.gov/learn/organ-donation-statistics.
2. The “17 per day” estimate is the long-standing figure cited by HRSA and organdonor.gov; it is an estimate and varies by year and method.
3. U.S. surpasses 49,000 organ transplants while deceased organ donations dip, UNOS: unos.org.
4. 2025 living-donor figures as reported in HRSA/OPTN and UNOS releases, summarized in the author’s research notes; verify the latest at hrsa.gov/optn.
5. OPTN/SRTR Annual Data Report: Kidney, American Journal of Transplantation: amjtransplant.org.

On December 23, 1954, in a Boston operating room, a surgeon named Joseph Murray took a kidney from a twenty-three-year-old man and placed it in his identical twin. The brothers shared a genome; the recipient’s immune system had nothing to reject. Nobody had a consent form like the ones used today. Nobody had an independent advocate, or a federal registry, or an insurer to argue with. They had a brother in kidney failure, a brother with two kidneys, and a surgeon willing to try.¹

Richard Herrick lived another eight years, long enough to marry and have two children. Ronald, the donor, lived another half-century. Murray would share the 1990 Nobel Prize in Physiology or Medicine. Transplantation’s first great success was a living-donor transplant. For the better part of a decade it was the only kind that worked.

The long decade of improvisation

Between that first operation and the modern system lies a messy, inspiring, and sometimes alarming history. Without drugs to suppress rejection, transplants worked reliably only between twins. As immunosuppression improved through the 1960s, transplants between non-identical relatives, then between strangers, became feasible. Donors were overwhelmingly family. Hospitals developed their own rules. Waiting lists were local and often informal. Whether a patient got a kidney could depend on which hospital they walked into and whom they knew.

In 1972 Congress made a decision that reshaped American kidney care: it extended Medicare entitlement to nearly everyone with end-stage renal disease, regardless of age. It remains one of the few instances in which the federal government covers a single disease category for the whole population. It made dialysis widely available and, by the same stroke, built a large, permanent financial interest in dialysis itself. Chapter 16 returns to that tension.

The Act that built the system

By the early 1980s the field faced a crisis of its own success. Transplants worked, demand exploded, and the arrangements for allocating organs were uneven and sometimes ethically troubling, including a short-lived, widely condemned scheme to broker the purchase of kidneys from living sellers. Congress responded with the National Organ Transplant Act of 1984.²

NOTA did several things at once. It created the Organ Procurement and Transplantation Network, the national system for matching and allocating organs, which the government contracts a private nonprofit to run, and the Scientific Registry of Transplant Recipients to collect outcomes data. It authorized assistance to organ procurement organizations. And, in a provision that shapes every living donor’s experience to this day, it made it a federal crime to knowingly acquire, receive or transfer a human organ for “valuable consideration” in interstate commerce. Chapter 5 is devoted to that sentence and the long argument it has produced.

From brokers to a national network

The OPTN began operating under a federal contract in the mid-1980s, and a 1998 federal regulation (42 CFR Part 121) formalized how it works. Over the next three decades the system grew into what it is today: a national matching network, a registry of outcomes, transplant programs certified by Medicare, and organ procurement organizations with exclusive service areas. In 2023, Congress passed legislation to break the single-contractor model of the OPTN, and in 2025 the Health Resources and Services Administration pressed ahead with a modernization effort that includes an independent, elected OPTN Board of Directors and a multi-vendor structure.⁴

The rise of the strangers

The most consequential change for living donors came late and from below. Two ideas transformed the field. The first was paired exchange: if your willing donor is not a match for you, perhaps they match someone else whose donor matches you, and the two pairs can swap. The second was the non-directed donor, a person who gives to someone they have never met, often starting a chain in which each recipient’s donor passes the gift forward. These practices turned a transaction between two people into a network. The National Kidney Registry, founded in 2007, is the largest of the organizations that built them, and the OPTN later developed its own kidney paired donation pilot.⁵

The effect was subtle and large. For the first time a donor who was not a match was not a dead end. A refusal by biology no longer had to end the story.

The recent turn: from permission to incentive

The last decade changed the policy conversation. In July 2019 Executive Order 13879, Advancing American Kidney Health, directed the Department of Health and Human Services to expand reimbursement for living donors’ costs. A 2020 rule did so, adding lost wages and child-care and elder-care expenses to the categories the federal government could reimburse, effective October 22, 2020.⁶ In July 2025 the Centers for Medicare & Medicaid Services began a mandatory six-year payment model, the Increasing Organ Transplant Access (IOTA) model, for 103 kidney transplant hospitals, tying payments to transplant volume, matching efficiency and outcomes, and requiring participating hospitals to post their living-donor selection criteria publicly.⁷ In Congress, the Living Donor Protection Act, which would bar certain insurance discrimination and clarify job-protected leave, was reintroduced in 2025 and, in February 2026, reported out of a Senate committee.⁸

That is a great deal of motion for a field that moved slowly for decades. It is worth noticing, however, that each reform acknowledges the same underlying fact: for seventy years the system relied on donors absorbing costs the system itself created.

1. Joseph E. Murray and the 1954 Herrick transplant: see Joseph E. Murray and the Guinness World Records entry for the first successful kidney transplant; the Nobel Prize was awarded in 1990.
2. National Organ Transplant Act of 1984 (Pub. L. 98-507): govtrack.us/congress/bills/98/s2048; Reagan signing statement at reaganlibrary.gov.
3. 42 U.S.C. §274e, Prohibition of organ purchases: uscode.house.gov.
4. HRSA, A Year in Review: Advancing OPTN Modernization (January 2026): hrsa.gov/optn-modernization.
5. National Kidney Registry paired donation: kidneyregistry.com; UNOS Kidney Paired Donation Pilot Program operational guidelines at unos.org.
6. Removing Financial Disincentives to Living Organ Donation, final rule, 85 Fed. Reg. 59438 (Sept. 22, 2020): federalregister.gov.
7. CMS Increasing Organ Transplant Access (IOTA) Model: cms.gov; changes finalized May 2026 per the American Hospital Association: aha.org.
8. Living Donor Protection Act of 2025, S. 1552, 119th Congress: congress.gov.

Two patients sit in two waiting rooms on the same morning. Both have kidney failure. Both have a sister who says she would help. One has a sister with paid leave, a spouse who can cover the mortgage, and a transplant center forty minutes away. The other has a sister who would lose a week’s pay she cannot spare, a four-hour drive to the nearest program, and no one to mind her children. On paper, the two patients have identical access to living donation. In practice, one of them has a chance and the other has a hope. Both are composites. Neither is rare.

Living donation is often described as a personal act. It is. It is also a distribution: some people receive living-donor kidneys far more often than others, and that distribution follows lines that medicine alone cannot explain. A candid book about living donation has to look at the lines.

The pattern in the registry

Research published over many years has documented that living-donor kidney transplantation is less common among Black and Hispanic patients than among white patients, among patients with lower incomes, among those with less education, and among those who live far from transplant centers. Studies of waiting-list patients find differences that persist after accounting for medical eligibility, which suggests the gap is not primarily about who is healthy enough to give.¹ Black Americans bear a disproportionate burden of kidney failure, so the shortfall in living donation is especially consequential for the communities that need kidneys most.

The reasons are layered. Kidney disease is more common in some families, which shrinks the pool of healthy relatives. Medical conditions that disqualify donors, such as hypertension and diabetes, are more common in the same families. Distrust of medical institutions, earned over a long history, makes some people reluctant to enter a hospital as a donor or to ask others to. Information is unevenly distributed: patients who know to ask about living donation early have better odds, and that knowledge travels through certain social networks more than others. And then there is money, which gets its own chapter, and which functions as a gate that some can open and others cannot.

Who actually becomes a donor

The typical living kidney donor is a relative or close friend of the recipient, healthy, insured, with a stable job and the practical means to take time off. Women donate more often than men, and men receive living-donor kidneys more often than women, a pattern researchers have studied for years and not fully explained. Several factors are plausible: women are more often asked, more often caregivers, and more often found medically eligible by some criteria; men are more often recipients of the kidney disease types that trigger transplant. The pattern deserves honesty, not neat explanations. It also deserves attention to whether the way potential donors are screened, and the way recipients are evaluated, treats people equally.

The non-directed donor, who gives to a stranger, looks different still: often white, college-educated, and motivated by faith, a sense of moral duty, or a story they heard. Their gifts matter enormously, since a single such donor can start a chain of many transplants. But they cannot be the main answer to a structural problem, because they do not fix who gets asked, who is eligible, or who can afford to say yes.

Geography as destiny

Where you live changes your odds. Transplant programs vary widely in how many living-donor transplants they perform and in how well they support potential donors. Some programs treat a living donor as a major part of their mission; others treat it as an afterthought. A patient in a region with a high-volume, donor-friendly center can find themselves with practical advantages that a patient in another state does not have. This is part of why the federal government has begun to require more transparency: under the IOTA model, participating hospitals must publicly post the criteria they use to select living donors.² Sunlight does not fix inequity, but it makes it visible, and what is visible can be argued about.

What a fair system would measure

A fair system would publish, for every transplant program, how many people expressed interest in donating, how many completed an evaluation, how many were approved, how many dropped out and why, and how those numbers differ by race, income and geography. It would treat dropout, the failure of willing donors to reach the operating table, as a performance measure and not as an inevitable loss. Project Donor-Flow, the Foundation’s research initiative, argues that the great majority of people who say yes to living donation never reach surgery, and that most of those losses are not medical, they are logistical and financial. Whether the precise figure holds in any given year is a question for the registry; that the pipeline leaks is not in serious dispute.

1. See, for example, Addressing Racial/Ethnic Disparities in Live Donor Kidney Transplantation: Priorities for Research and Intervention (PMC2818251) and Racial Equity in Living Donor Kidney Transplant Centers, 2008–2018, JAMA Network Open (jamanetwork.com).
2. CMS IOTA Model overview and requirements: cms.gov.

You are sitting across from a transplant coordinator. She says, in a kind voice, “We’re required to do this,” and slides a form across the table. You sign. You do not ask who required it. That small silence, repeated millions of times in American health care, is where people lose their grip on how the system actually works. This chapter gives it back to you.

Living donation is governed by a stack of authorities, each with its own author and its own enforcer. Knowing which layer a rule belongs to tells you how firm it is, who can change it, and where to complain.

Layer one: the statute

The foundation is the National Organ Transplant Act, as amended, in Title 42 of the U.S. Code. NOTA created the Organ Procurement and Transplantation Network and the Scientific Registry of Transplant Recipients, forbade the sale of organs, and authorized federal support for living-donor-related expenses. A later provision, Section 377 of the Public Health Service Act, authorizes the reimbursement of living donors’ travel and subsistence expenses, and that authority is the basis of the National Living Donor Assistance Center.¹

Congress also passed the Organ Donor Leave Act in 1999, raising the paid leave available to federal employees who donate an organ from seven days to thirty days a year, separate from annual and sick leave.² That is the only federal guarantee of paid leave for living donors in the United States, and it covers federal employees alone.

Layer two: the regulations

Statutes are general; regulations supply the detail. The OPTN operates under 42 CFR Part 121, which sets out how the network is organized and how its policies bind members. Transplant programs that take Medicare must also meet the Conditions of Participation in 42 CFR Part 482, including specific requirements for transplant centers covering patient and living donor selection and patient and living donor rights (§§482.90 and 482.102 among others).³ These are federal rules enforced through CMS and state survey agencies, and a program that violates them risks its Medicare certification.

Layer three: OPTN policy

Between statute and daily practice sits the thick layer of OPTN policy. These are rules adopted through the network’s committee process and binding on its members. For living donors, the key material is Policy 14, Living Donation, which sets requirements for informing and evaluating potential donors, for the independent advocate, for the psychosocial evaluation, and for reporting. Related requirements on data submission and follow-up appear elsewhere in the policy manual.

OPTN policies matter because they reach into the hospital in ways the statute never could. They tell a program what it must tell you, who must meet you, and what it must report to the government after you leave. They are also where much of the practical protection of living donors lives. And they can change faster than statutes. In 2016 the OPTN modified the informed consent requirements for potential living donors; in 2021 it extended living-donor policy to include donors of other organs and vascularized composite tissue.⁴ It pays to look up the current policy rather than rely on a pamphlet.

Layer four: the program’s own protocols

Below the policies are the individual programs’ protocols: the specific tests they require, the thresholds they apply, the committees that decide. This layer varies. One program may accept a donor with well-controlled hypertension and another may decline. Neither is necessarily wrong. But a donor deserves to know the criteria, and under the IOTA model participating hospitals will have to post their living-donor selection criteria publicly, a change that moves this layer into the open.

The oversight layer, and its current upheaval

For nearly forty years a single private contractor operated the OPTN under HRSA oversight. A 2023 federal law ended that arrangement, and during 2025 HRSA moved to implement it: establishing an independent, elected OPTN Board of Directors, separating functions among multiple vendors, and taking over direct collection of patient registration fees.⁵ Whatever one thinks of the reforms, the consequence for patients is that the rule-making body and its processes are in transition. When you read an OPTN policy, check its effective date and look for pending changes.

Where the cracks are

The stack looks orderly. In practice, a living donor falls through the gaps between layers. The OPTN regulates what a transplant program must do for you, but not what your employer or your life insurer may do. CMS covers the recipient’s transplant, and thereby much of the donor’s evaluation and surgery, but it does not guarantee care for a complication ten years later. The Department of Labor says donors may qualify for FMLA leave, but only if they work for a covered employer for long enough. NLDAC reimburses expenses, but it is an application program with eligibility rules, not an entitlement. Each layer does its job. No layer owns the donor.

1. National Living Donor Assistance Center: livingdonorassistance.org; legal history in Development of the NLDAC, PMC4374738.
2. Organ Donor Leave Act (1999) and OPM guidance: opm.gov.
3. 42 CFR Part 482 Subpart E, transplant center requirements; see CMS and ecfr.gov for current text.
4. OPTN/UNOS Policy Notice, Modifications to Informed Consent Requirements for Potential Living Donors (2016): hrsa.gov; Notice of OPTN Policy Changes (June 2021): hrsa.gov.
5. HRSA OPTN Modernization updates: hrsa.gov/optn-modernization.

A donor spends fourteen weeks recovering from a fully successful operation. The hospital, the surgeons and the anesthesiologists are paid. The transplant program receives revenue. The dialysis company that loses a patient to a transplant loses a customer. The donor, the one who made it all possible, loses pay, spends savings on travel, and receives, if everything is processed correctly, a partial reimbursement of some of their costs. The scene is composite. Variations of it are routine.

The sentence at the center

The prohibition is short. Title 42, Section 274e, says that it is unlawful for any person to knowingly acquire, receive, or otherwise transfer any human organ for valuable consideration for use in human transplantation if the transfer affects interstate commerce. Penalties include up to five years in prison and a fine of up to $50,000.¹ The statute defines what “valuable consideration” does not include: reasonable payments associated with removal, transportation, implantation, processing, preservation, quality control and storage, and, crucially for donors, “the expenses of travel, housing, and lost wages incurred by the donor of a human organ in connection with the donation of the organ.”

Read closely, the law forbids selling organs. It does not forbid making donors whole. The gap between those two ideas is the territory of this chapter.

What the rule is protecting

The case for the ban is not trivial, and any honest guide has to state it fairly. First, the fear of exploitation: if organs could be sold, the people most likely to sell would be the poorest, and the buyers the richest, converting a medical gift into a market in which bodies are used as commodities. Second, the fear of coercion and undue inducement: a payment large enough to matter to a desperate person may distort a decision that is supposed to be free. Third, the worry about trust: public willingness to register as a deceased donor may depend on the belief that the system is not a market. And fourth, a moral intuition, widely held and hard to argue with, that some things should not have prices.

Those concerns shaped NOTA after a 1983 episode in which a physician proposed to broker kidneys from paid living sellers. They remain the dominant view among transplant professionals, in the World Health Organization’s guidance, and in the 2008 Declaration of Istanbul, which condemned organ trafficking and transplant tourism.

What the rule is costing

The counter-argument is not that organs should be sold. It is that the current line is drawn so cautiously that donors routinely end up financially worse off, and that this, too, distorts who donates. The cost of donating is real. Lost wages during recovery. Travel to a distant center for evaluation and surgery. Child care. Elder care. Higher insurance premiums in some cases. Time off for follow-up visits that no one ever pays for. A person with resources absorbs these. A person without them cannot, and the law, in effect, selects for the first kind of donor.

The federal government acknowledged this in 2019, when Executive Order 13879 directed HHS to propose expanding reimbursement for living donors. The resulting rule, effective October 22, 2020, broadened the reimbursable expenses under the NLDAC program to include lost wages and child-care and elder-care expenses.² That was a meaningful change, and it also illustrates the limits of the approach: it is a reimbursement program with eligibility rules, a finite budget, and an application process, not a guarantee.

The reforms on the table

Between the absolutes lies a long list of ideas that stop short of a market. They fall roughly into three groups.

Remove financial disincentives. Expand and streamline reimbursement; make it automatic rather than an application; cover lost wages fully; remove income tests; extend coverage to lifetime follow-up care and to complications. Few people object to this in principle. Debate centers on cost and design.

Tax-based approaches. The Living Organ Donor Tax Credit Act, reintroduced in Congress, would create a refundable tax credit of up to $5,000 for expenses related to donation.³ Several states offer deductions or credits. Supporters see this as reimbursement through the tax system; critics worry about drift toward payment and note that a credit helps people who owe taxes less than those who do not.

Regulated incentives. Some scholars propose pilot programs offering benefits such as health coverage or priority status on the waiting list for future need. Others go further and argue for a regulated market for kidneys, with Iran, which has permitted regulated payments to living donors, as the cautionary or aspirational example depending on who tells the story. These proposals are controversial, and the weight of professional opinion in the United States opposes them. A guide should report them without endorsing them. They illustrate how much disagreement exists once the conversation moves beyond making donors whole.

The practical advice

If you are considering donating, treat the money as a first-order question, not an embarrassing afterthought. Ask the program’s social worker what costs are likely, and which are reimbursable. Check eligibility for the National Living Donor Assistance Center before your evaluation, not after surgery, since reimbursement is generally prospective and eligibility rules have changed in recent years. Ask your employer, in writing, what leave you are entitled to. Ask your insurers how donation could affect your coverage. Chapter 7 and Chapter 8 take these steps in detail.

1. 42 U.S.C. §274e: uscode.house.gov; ABA overview of Legal Issues in Payment of Living Donors for Solid Organs: americanbar.org.
2. Removing Financial Disincentives to Living Organ Donation, 85 Fed. Reg. 59438 (Sept. 22, 2020): federalregister.gov; HRSA press release on the rule at hrsa.gov.
3. Living Organ Donor Tax Credit Act (H.R. 3698, 119th Congress): govinfo.gov.

She says yes at the kitchen table, before anyone has asked a question. Her brother is on dialysis, her mother is watching, and the pause that follows is the longest she has ever heard. Later, in a quiet room at the hospital, a person she has never met asks whether anyone is pressuring her. She hesitates, then says no, because she cannot imagine saying anything else. The scene is composite, and it is the one the law is built to catch.

The central ethical problem of living donation

Almost every other medical procedure carries a risk that the patient accepts for their own benefit. Living organ donation is different. The donor accepts risk, small but real, with no medical benefit to themselves, for the sake of someone else. The ethical justification rests entirely on one thing: that the donor’s choice is informed, voluntary, and theirs. Everything in the regulatory architecture around donation is an attempt to protect that voluntariness against the forces that threaten it: family pressure, guilt, financial need, the wish to be good, and the institutional appetite of a transplant program that benefits from a transplant.

What the rules require

OPTN policy addresses this directly. Programs must give potential living donors specific information before they agree, a list that has grown over the years to include the medical, surgical, psychosocial and financial risks of donation, the possibility of long-term complications, the donor’s right to stop at any point, and the fact that the program’s decision to accept or decline them will be kept confidential. In 2016 the OPTN modified the informed consent requirements, and in the years since has issued guidance for programs on how to carry them out.¹

The same policy framework requires each donor to be offered an Independent Living Donor Advocate (ILDA), a person who is not involved with the recipient’s evaluation, is independent of the decision to transplant the recipient, and whose job is to ensure that the donor’s interests are represented. Under the requirement, for any living kidney donor undergoing evaluation, the recovery hospital must designate and provide an ILDA. The requirement extends to living donors of other organs. The ILDA assesses whether the donor meets the standards of informed consent and whether their decision is free from coercion.²

The psychosocial evaluation is a separate requirement. It must be performed by a clinical social worker, psychologist or psychiatrist and includes an assessment of mental health, the ability to make an informed decision, the ability to cope with stress, and, specifically, whether the decision to donate is free of inducement, coercion and other undue pressure.³

What happens when the process works

When the system works, it is a quiet marvel. A potential donor meets a nurse coordinator, then a nephrologist, a surgeon, a social worker, a dietitian, and an advocate who asks, in private, whether this is really what they want. The advocate is not trying to talk them in or out of it. The advocate is the one person in the building whose only client is the donor. If the donor wants out, the program offers a medical reason that need not be true, so that the recipient never learns it was a refusal. Many donors have said that this gentle exit is what made it possible to say yes.

Where it breaks

The failures are not usually dramatic. They are structural. The advocate is typically an employee of the same hospital, and in a busy program may be a social worker or nurse with other duties, trained on the job. The independence the policy requires is organizational, not financial, and independence inside an institution is always partial. Some advocates are excellent; some are an administrative checkbox. Programs have an incentive to keep donors moving and, in a context of volume-based incentives, increasingly strong reasons to count transplants. None of this implies bad faith. It does mean that the safeguards depend on the culture of the individual program, and donors should treat them that way.

There is also the problem of the soft coercion no policy can detect. A relative who says nothing but sighs. A spouse whose silence communicates what is expected. A family that treats a refusal as betrayal. The ILDA can catch some of this. The potential donor must catch the rest, by taking the time to find out what they actually want before the conversation reaches the hospital.

A practical protocol for the potential donor

Before any appointment, write down, privately, why you are considering this. Notice whether the reasons are yours. Notice what you would feel if you said no, and whether the answer is relief or dread. Choose one person who is not the recipient, not a relative of the recipient, and not employed by the hospital, and tell them the truth. When you meet the advocate, ask what their role is, who they report to, and what happens to what you say. Ask whether the program has ever turned a donor away because of coercion. Ask for the “graceful exit” in advance, so you know what the program will say if you withdraw.

1. OPTN/UNOS Policy Notice, Modifications to Informed Consent Requirements for Potential Living Donors (2016): hrsa.gov; OPTN Guidance for the Informed Consent of Living Donors: hrsa.gov/optn.
2. The Independent Living Donor Advocate: A Guidance Document From the AST Living Donor Community of Practice, American Journal of Transplantation: sciencedirect.com.
3. The Psychosocial Evaluation of Living Kidney Donation: Time for Standardization in Practice: PMC11518646; Psychosocial and ILDA Evaluation: PMC4575900.

Three weeks before her operation, a nurse manager asks her employer for leave. HR says she qualifies for twelve weeks unpaid under federal law, if she has worked there a year, if the company has fifty employees within seventy-five miles, and if the paperwork is correct. She has, it does, and it is. She still cannot afford twelve unpaid weeks. So she borrows against a retirement account, tells herself it is a loan to the future, and tries not to do the arithmetic. The scene is composite. The arithmetic is real.

Work: the law that mostly isn’t there

There is no federal law that requires private employers to give paid leave to a living organ donor. The Family and Medical Leave Act provides up to twelve weeks of unpaid, job-protected leave a year for a serious health condition, and the Department of Labor has long taken the position that recovery from organ donation qualifies. That guidance matters, but it is guidance, not statute. FMLA also reaches only employees of covered employers, those with fifty or more employees, who have worked at least twelve months and 1,250 hours. Many workers, including most part-time and gig workers and many employees of small businesses, are outside it.

The one federal exception is for federal employees. The Organ Donor Leave Act of 1999 gives them up to thirty days of paid leave a year for organ donation, separate from annual and sick leave.¹ It is a model that shows the policy is practical.

Beyond that, the law is a patchwork of state statutes. Some states require paid or unpaid leave for organ donors; some provide paid leave for state employees only; some have nothing. Louisiana, for example, enacted a law effective August 1, 2026, requiring employers to provide paid leave to employees who undergo medical procedures to donate an organ.² The American Kidney Fund’s State of the States tool and the National Kidney Foundation’s compendium of state laws are the best current maps; use them, since statutes change every year.³

Insurance: the quiet penalty

Medically, donors are healthy. Actuarially, some insurers treat them as a risk. Studies of living donors have found that a meaningful minority reported difficulty obtaining life insurance after donation, being denied coverage, charged more, or told they had a “pre-existing condition,” with one study published in the American Journal of Transplantation reporting that about one in four donors had such trouble.⁵ Life, disability and long-term care policies are largely outside the Affordable Care Act’s protections, which is why this form of discrimination is legal in most places and why the Living Donor Protection Act targets it.

Health insurance is a different matter. Under the ACA, insurers generally cannot deny coverage or charge more because of a pre-existing condition, and being a donor does not change that. But donors can face trouble with complications: whose insurance pays for care for a condition that arises from the donation, years later? The recipient’s insurance, usually Medicare or a private plan, covers the donor’s evaluation and surgery. Beyond the immediate perioperative period, coverage for complications is inconsistent. Some programs and some states address it; others do not. Ask the program in writing, before surgery, who pays for complications and for how long, and keep the answer.

Taxes: a small and uneven benefit

The federal tax code gives living donors little. Unreimbursed medical and travel expenses connected with donation may qualify as itemized medical deductions if they exceed the usual threshold, but most households do not itemize at levels that make this useful. Some states offer their own deductions or credits for expenses related to living donation; many do not. The proposed federal Living Organ Donor Tax Credit Act would create a refundable credit of up to $5,000 for donation-related expenses, an idea with growing support, and a reminder that the burden of proof sits with those who would leave things as they are.⁶ Tax rules change; confirm with a tax professional what applies to you in the year you donate.

Other protections worth knowing

The Americans with Disabilities Act protects against discrimination on the basis of a disability, and a donor recovering from surgery may qualify for reasonable accommodations at work during that time. It does not make donation itself a disability. Genetic privacy rules (GINA) bar health insurers and employers from using genetic information, which may matter for some donor evaluations. The Uniformed Services Employment and Reemployment Rights Act and military and VA policies create separate paths for service members and veterans, and anyone in that category should ask the program’s social worker and their command or VA coordinator early. And HIPAA protects the confidentiality of a donor’s own medical information, including from the recipient’s team in many circumstances.

1. Organ Donor Leave Act (1999) and OPM fact sheet: opm.gov.
2. Louisiana organ donor leave law, effective Aug. 1, 2026: Rubin Fortunato summary; verify against the enacted text at legis.la.gov.
3. American Kidney Fund, State of the States: livingdonor.kidneyfund.org; National Kidney Foundation, State Laws Impacting Living Organ Donation: kidney.org (2022 edition; check for updates).
4. S. 1552, Living Donor Protection Act of 2025: congress.gov; American Kidney Fund statement: kidneyfund.org.
5. Insurance difficulty among donors as cited in advocacy summaries of studies in the American Journal of Transplantation; see the Living Donor Protection Act summaries linked above.
6. Living Organ Donor Tax Credit Act: govinfo.gov.

A hospital billing system does what billing systems do. It sorts costs into columns: the donor’s evaluation, the donor’s surgery, the recipient’s surgery, the recipient’s drugs. The donor’s costs are billed to the recipient’s insurer. The line labeled “donor lost wages” does not exist. The system is not malicious. It is doing exactly what it was built to do, and it was not built for her.

The medical bills: who pays what

In the United States, the donor’s evaluation, surgery and hospital stay are generally billed to the recipient’s insurance. For Medicare-covered recipients, that means Medicare, which has special rules treating the donor’s costs as part of the recipient’s transplant cost. For privately insured recipients, it means the recipient’s plan. The donor does not usually receive a bill for the surgery, and this works well in the typical case. The common failures happen at the edges: a test done before the recipient is formally approved, a follow-up visit after the standard window, a complication that arises long after the transplant, a recipient whose insurance changes. A donor who is billed erroneously should not pay; they should call the program’s financial coordinator and, if necessary, the recipient’s plan, and keep a written record.

The non-medical costs: the real gap

The costs that fall on donors are mostly non-medical. Lost wages during recovery, which for many people is four to twelve weeks depending on the job. Travel to the transplant center for the evaluation, which can take two days and multiple trips, and for surgery and follow-up. Lodging. Meals. A caregiver’s time off. Child care and elder care. These costs can run from a few hundred dollars for a local donor with generous leave to many thousands for a distant donor with none.

Federal policy has long recognized the problem. The National Living Donor Assistance Center, funded by HRSA, reimburses eligible donors for travel, lodging and meals associated with evaluation, surgery and follow-up, and, since the 2020 rule, can also reimburse lost wages and child- and elder-care expenses for donors who lack other financial support. Reimbursement is generally prospective: an approved applicant receives a controlled-value card to pay covered expenses, for themselves and up to two accompanying persons, up to a set maximum. Eligibility rules prioritize donors and recipients with lower incomes and have changed over time, so verify current criteria on the NLDAC website before relying on them.¹

What the hospital earns, and what it doesn’t

Transplant programs are economically significant for hospitals. A transplant center earns revenue from the recipient’s transplant, from a continuing stream of follow-up care and from associated services. The donor generates costs, absorbed by the recipient’s insurance, and, from the program’s point of view, a quality metric. Programs are judged by transplant volume and by recipient outcomes. Donor outcomes beyond the first two years are, in practice, nobody’s performance measure. That asymmetry does not make programs unethical. It does explain why donor-friendly features such as donor navigators, lodging, pre-approved leave letters and long-term follow-up depend so heavily on the individual program’s priorities.

The new incentive structure: IOTA

In July 2025 the Centers for Medicare & Medicaid Services launched the Increasing Organ Transplant Access (IOTA) Model, a mandatory six-year payment model for 103 kidney transplant hospitals, running through June 30, 2031. Participating hospitals are scored on three things: the number of kidney transplants they perform, how efficiently they match and use organs, and how well their patients do after transplant. High performers earn payments; low performers pay penalties. Hospitals must also post publicly their criteria for selecting living donors.² In 2026 CMS finalized adjustments to the model.

IOTA is significant because it places a financial thumb on the scale for transplantation, including living-donor transplantation, for the first time at scale. Whether it will also improve donors’ experience depends on how hospitals respond. A hospital can raise its numbers by building a better program for donors, or by recruiting and screening more aggressively. A watchful public, and an alert potential donor, can tell the difference.

A donor’s budget

Before you commit, build a one-page budget. List every cost you can foresee: lost wages in weeks, the daily rate of any partial pay, the number of trips and miles to the center, nights of lodging, meals, child care, elder care, and the costs for the person who will care for you. List every source of coverage: employer leave, short-term disability if any, state programs, NLDAC, the recipient’s insurance, support from family and community. Subtract. If the gap is more than you can bear, you have a financial problem to solve before your evaluation, not after. Programs have social workers and financial coordinators whose job includes helping you do this; use them.

1. NLDAC program information and eligibility: livingdonorassistance.org; Removing Financial Disincentives to Living Organ Donation, final rule: federalregister.gov.
2. CMS IOTA Model: cms.gov FAQs; Jones Day summary of the final rule: jonesday.com; 2026 updates in the Federal Register, June 1, 2026.

The questionnaire arrives by email. It asks about her health, her family, her work, her relationships, whether she smokes, whether she drinks, whether anyone has ever told her what to do with her body. She completes it on a Sunday night with a glass of water and the strange feeling of being interviewed by an institution that has not yet decided whether she is worth the risk to the person she loves. This is how it begins. It will take months, and the odds of reaching surgery are not what she imagines.

The funnel

Evaluation is a funnel. Many people express interest. A smaller number complete a health history. Fewer still complete screening labs and an in-person evaluation. A smaller number again are approved. A minority donate. Some drop out for medical reasons: kidney function that falls short, hypertension, diabetes, obesity, stones, a family history of kidney disease, a finding on imaging. Some drop out for non-medical reasons: cold feet, a change in the recipient’s health, a new transplant option, the cost, the time, the family conflict. Both kinds of drop-out are legitimate. Both deserve attention, because some are preventable.

What it typically involves

Programs vary, but the pattern is consistent. It begins with a health history form for the specific transplant center. A first round of blood and urine tests, sometimes done locally, screens out obvious problems. Then an in-person evaluation, usually one to two days, in which you meet the living donor team: a nurse coordinator who will be your point person, a transplant nephrologist who evaluates your kidney function and overall health, a social worker or psychologist who assesses your support and your readiness, a surgeon who explains the operation, often a dietitian, and an independent living donor advocate.¹ Tests include blood work for blood type, tissue typing and general health; measures of kidney function; urine studies; an assessment of blood pressure; and imaging, usually a CT scan, to map the kidneys and their blood vessels. Women of childbearing age receive pregnancy counseling. Cancer screening appropriate for your age is typically required. In total, an evaluation commonly stretches from a few months to a year.

A donor’s compatibility with a specific recipient is determined in stages: blood type, tissue (HLA) typing, and the crossmatch test, which checks whether the recipient’s immune system will attack the donor’s cells. Incompatibility is no longer a dead end, as Chapter 14 explains.

Who is excluded, and why it varies

No single national checklist decides who can donate. Broadly, programs look for good overall health, normal or near-normal kidney function for age, controlled or absent hypertension, no diabetes, a healthy body weight or one that can be brought into a safe range, no history of significant kidney disease or recurrent stones, no active cancer, and no psychological or social circumstances that make donation unsafe or involuntary. Each program interprets the gray zones differently. A donor with mild, well-controlled hypertension may be accepted by one program and declined by another. Age limits differ. Weight thresholds differ. If a program says no, you may ask why, and you may ask for a second opinion at another center, subject to what the recipient’s team agrees.

The long game: a lifetime of risk estimates

Tools now exist to estimate an individual candidate’s lifetime risk of kidney failure with and without donation, and to compare it to the general population. The risk projection published in the New England Journal of Medicine in 2016 is one such effort.³ Such tools are not crystal balls, and they depend on assumptions. But they allow a conversation grounded in numbers specific to you, not in averages for everyone. Ask your program whether it uses one, and what your projected risk is, over what time horizon, and with what uncertainty.

If you are turned down

A refusal is not a verdict on your worth. It is a medical judgment, or a program’s risk tolerance, or a mismatch. Ask for the reason in writing. Ask whether another program would apply different criteria. Ask whether there are other ways to help: a paired exchange, a donor champion role for the recipient, a blood-drive, an advocacy contribution. Many people who cannot donate become the most effective advocates for those who can.

1. National Kidney Foundation, Living Kidney Donor Evaluation: kidney.org; Testing Involved in the Living Donor Evaluation Process: kidney.org.
2. OPTN, New Living Kidney Donor Program Requirements: Standardizing Patient Care: optn.transplant.hrsa.gov.
3. Grams ME et al., Kidney-Failure Risk Projection for the Living Kidney-Donor Candidate, N Engl J Med 2016: nejm.org.

She asks the question every donor asks, in one form or another: “So what are my odds?” The surgeon answers fluently, with numbers. She nods. Only in the parking lot does she realize that she has not understood whether “very low” means one in a hundred or one in ten thousand, and that she was too polite to ask. This chapter exists so you are not too polite.

The short-term risk: the operation

The perioperative risk of death in a living kidney donor is low. Studies of U.S. donors have estimated it at roughly three deaths per ten thousand operations, with the risk falling over time as surgical technique has improved.¹ Complications are more common than deaths: bleeding, infection, hernia, bowel problems, blood clots, pain that lasts longer than expected, and the occasional need for another operation. Most are treatable. Most donors go home in two to four days and return to desk work in four to six weeks, though physically demanding jobs take longer, and a minority have a harder recovery than they expected.

The long-term risk: living with one kidney

The research story here is more nuanced than either optimists or pessimists admit. Early studies found that donors lived as long as comparable non-donors and did not have an excess of kidney failure.² Later work with larger numbers and longer follow-up changed the picture without overturning it. A widely cited 2014 analysis in JAMA followed U.S. donors for a median of 7.6 years and found that the estimated risk of end-stage kidney disease at fifteen years was 30.8 per 10,000 donors, compared with 3.9 per 10,000 in carefully matched healthy non-donors. The relative increase is large; the absolute risk remains small.³ A 2016 NEJM analysis used long-term data to project risk with and without donation for individuals, and found that observed fifteen-year risks among donors exceeded the projections for the same people had they not donated, by factors of about 3.5 to 5.3, again from a low baseline.⁴

The right way to hold both facts: living kidney donation raises the long-term risk of kidney failure, usually by a small absolute amount, and the effect is larger in some groups than in others. Risks appear to be higher for people who are Black, who have a family history of kidney disease, who are older, or who have high blood pressure or higher body weight. These are exactly the characteristics that programs weigh when deciding who may donate.

Other long-term findings

Blood pressure and kidney function. After donation, kidney function falls by about a third to a half in the short term and then partly recovers as the remaining kidney enlarges. Many donors have a reduced but stable function for life. Older age and higher body mass are associated with lower function and with hypertension.²

Pregnancy. Studies have found a higher risk of pregnancy complications among women after donation, including preeclampsia, with pooled estimates in the range of a roughly threefold increase in odds, though absolute risks remain modest and most pregnancies after donation are uncomplicated. Some analyses also show modestly higher risks of low birth weight.⁵ Women who may become pregnant after donation should discuss this specifically with the program and with an obstetrician, and ask about low-dose aspirin and monitoring.

Mental health. Most donors report that they would donate again and describe the experience as meaningful. A minority experience depression, anxiety, regret, or strain in the relationship with the recipient, particularly if the transplant fails or the relationship sours. These outcomes are underreported and under-studied, which is itself a finding.

The data gap

The honest limit of this chapter is that long-term data on donors are thinner than anyone would like. OPTN policy requires programs to follow donors for two years, and U.S. programs historically struggled to reach even that standard. Registry studies that look at later outcomes rely on linking to other databases, with all the limitations that implies. Nobody knows, with the precision that a decision this large deserves, how a given donor will fare thirty years later. That uncertainty is a reason for lifelong monitoring and for better data collection. It is not a reason for panic or for complacency.

How to ask for your numbers

Ask for risk in absolute terms: “Out of a thousand people like me, how many develop kidney failure in twenty years, with and without donation?” Ask for a time horizon, since a risk that is small over five years may be meaningful over fifty. Ask what the numbers are based on, and who the study participants were. Ask what your personal risk factors add. Ask what happens if the remaining kidney fails, including your priority status on the waiting list: under current OPTN policy, former living donors who later need a kidney receive priority, a safeguard worth confirming with the program in writing.

1. Segev DL et al., Perioperative mortality and long-term survival following live kidney donation, JAMA 2010; and Thirty-Year Trends in Perioperative Mortality Risk for Living Kidney Donors: PMC11359088.
2. Ibrahim HN et al., Long-Term Consequences of Kidney Donation, N Engl J Med 2009: nejm.org.
3. Muzaale AD et al., Risk of End-Stage Renal Disease Following Live Kidney Donation, JAMA 2014: jamanetwork.com.
4. Grams ME et al., N Engl J Med 2016: nejm.org; Annual Review of Medicine, Long-Term Risks of Living Kidney Donation: annualreviews.org.
5. Pregnancy in Living Kidney Donors: An Evidence-Based Review: PMC10512453; Risk of pregnancy complications in living kidney donors, systematic review and meta-analysis: sciencedirect.com.

The morning of the surgery she is calmer than she expected and more frightened than she admits. A nurse takes her blood pressure, a resident asks her name three times, an anesthesiologist explains what she will feel and what she won’t. She thinks of her brother, in another room, being prepared for the other half of the operation. For a few minutes, before the sedative, they are two people in two beds in the same building, the closest they have ever been to each other and the farthest apart.

The operation

Most living kidney donations in the United States are performed laparoscopically, through a few small incisions in the abdomen and a slightly larger one to remove the kidney, often hand-assisted. Robotic approaches are increasingly used. The surgeon chooses which kidney to remove, generally leaving the donor with the better-functioning one. The kidney is flushed with a cold preservation solution, which is where this foundation takes its name: the interval between the moment the kidney leaves the donor and the moment blood flows through it again in the recipient is called cold ischemia time, and in a living-donor transplant it can be measured in an hour or two. The operation takes roughly two to four hours. The recipient’s operation proceeds in the adjacent room.

The hospital stay and the first weeks

Most donors stay in the hospital two to four days. Pain is real and manageable: abdominal soreness, shoulder pain from the gas used in laparoscopy, fatigue, and sometimes nausea. Programs generally ask donors to walk early, avoid lifting heavy objects for several weeks, and abstain from nonsteroidal anti-inflammatory drugs such as ibuprofen, which can strain the remaining kidney. Most donors feel dramatically better by two weeks and close to normal by six, but this is an average, and recovery varies with age, fitness, the nature of the surgery and the job. Planning for twelve weeks of reduced capacity, even if you need less, is wiser than planning for four and needing more.

What no one rehearses: the emotional aftermath

Donors speak, afterward, of several things clinical summaries leave out. There is often a letdown. The intensity of the preparation, the attention, and the sense of purpose gives way to a quiet recovery and to the realization that the world has gone back to normal. Some donors feel a loss they did not expect and have trouble naming. Some feel a pride that they hesitate to express. Some feel anxiety about the remaining kidney, a vigilance about every ache. And the relationship with the recipient is complicated by the fact that a gift of this kind creates obligations nobody asked for: the recipient may feel indebted, the donor may feel scrutinized for how they behave, and each may feel unable to be honest about the difficult days.

These feelings are common and not pathological. They are the ordinary human response to an extraordinary event. A good program has social-work support available after surgery, and donors should use it. Peer support, whether through a hospital group, the National Kidney Registry, or the American Society of Transplantation’s resources, is often more useful than any pamphlet.

Returning to life

Most donors return to normal activity, including exercise, travel, and eventually most sports, within a few months. Programs advise a healthy diet, regular exercise, blood-pressure control, avoidance of nephrotoxic drugs, and annual checkups with kidney function and blood-pressure tests. That list is not the tax of having donated; it is good advice for anyone. But for a donor it carries a specific weight: it is the maintenance that protects the one kidney left. Chapter 13 describes how that maintenance is supposed to be supported, and how often it is not.

1. National Kidney Foundation, Becoming a Living Donor and The Donor’s Path: kidney.org; NIDDK, Kidney Transplant: niddk.nih.gov.

A father stands in a hospital corridor holding a coffee he has not touched. His daughter, nine years old, has a failing liver. Her best option is a piece of his. The surgeon has drawn a diagram on a napkin: a right lobe for an adult recipient, a smaller left lobe for a child. The numbers on the diagram are percentages, and the father reads them as odds. He asks the question out loud: “What are the chances something goes wrong with me?” The honest answer is not the one he wants.

Why the liver is different

The liver regenerates. A donated portion of a healthy liver regrows within weeks to months in both donor and recipient. That biological fact made living liver donation possible, and also hides its difficulty. The operation to remove a lobe is a major abdominal operation, longer and riskier than a kidney donation. Recovery is longer and more variable. Pain can be significant. Return to full activity commonly takes two to three months or more.

In 2025, living donors made possible 709 liver transplants in the United States, a 17 percent increase over the prior year, a small number beside kidneys but a growing one.¹ Living liver donation is performed in only some transplant centers, since it requires a team experienced in both donor and recipient surgery.

The risks, plainly

The risk of death for a living liver donor is higher than for a kidney donor. Published estimates range from about 0.15 to 0.5 percent overall, with the highest risk in the first few months and the higher end of the range for right-lobe donors, whose operation removes more of the liver; left-lobe donation is associated with lower risk, nearer 0.1 percent.² Complications are common: studies report a complication rate of about 15 to 25 percent on average, and as high as 40 percent after adult-to-adult right-lobe donation. Most are minor and resolve; a small proportion, around one percent, are near-miss, potentially life-threatening events. In the large Adult-to-Adult Living Donor Liver Transplantation Cohort Study (A2ALL), roughly six percent of donors first experienced a complication a year or more after surgery, most commonly hernia, bowel obstruction and psychological complications, and while 95 percent of complications resolved within a year, only about three-quarters of hernias and well under half of psychological complications did.³

The psychological dimension

The A2ALL findings include a sobering note. Among the deaths in that cohort, two of three occurred more than a year after donation and were attributed to psychological causes. That finding is rare and is not a prediction. It is a reason to take the psychological side of donation seriously: screening before surgery, support after, and attention to donors who struggle. A donor who is depressed, isolated or ashamed of feeling regret needs a program that checks in, and a family that knows the signs.

The rarer gifts

Lung. Living-donor lobar lung transplantation, in which two donors each give a lobe to one recipient, is performed rarely in the United States and requires specialized centers. Intestine and pancreas. Segmental living donation exists but is uncommon. Uterus. Uterus transplantation, including from living donors, has moved from experiment to a small number of programs, with specific ethical and medical requirements. The OPTN extended its living donor policies in 2021 to cover donors of vascularized composite tissue and other organs, which means that the safeguards described in Chapter 6 apply across a wider range of gifts.⁴ A donor considering any of these should ask for the program’s own experience and outcomes, since sample sizes are small and differences between centers matter.

1. 2025 living-donor liver transplant counts: HRSA/OPTN data and UNOS releases; see hrsa.gov/optn.
2. Estimates of Early Death, Acute Liver Failure, and Long-term Mortality Among Live Liver Donors, Gastroenterology: gastrojournal.org; Live Donors in Liver Transplantation: PMC2654217.
3. Long-Term Medical and Psychosocial Outcomes in Living Liver Donors: PMC5510163; A2ALL cohort overview: clinicaltrials.gov.
4. Notice of OPTN Policy Changes, Modify Living Donor Policy to Include Living VCA Donors (June 2021): hrsa.gov.

Fourteen years after her donation, a woman gets a letter from a research registry asking how she has been. It is the first time in more than a decade that anyone in the system has inquired. She is fine, she reports, though she has been told she has mild hypertension, and no one has ever told her what to do about her one kidney. She holds the letter for a long time. It is not a bad letter. It is a letter from a system that remembered her, finally, by accident.

What the rules require

OPTN policy requires transplant programs to follow living donors for a minimum of two years. Since 2005 programs have been required to submit Living Donor Follow-up forms at discharge (or six weeks, whichever is earlier), at six months, at one year and at two years after donation, with thresholds for the proportion of complete, timely reports. Recovery hospitals must report donor deaths within two years, and policy calls for reporting within 72 hours of the hospital learning of one.¹ Over time the OPTN has expanded the data collected, including data on later outcomes, and has issued guidance on procedures to collect post-donation follow-up data.²

That is the whole formal commitment. After two years, the system’s duty to the donor is, with minor exceptions, over.

The gap and its consequences

The significance of that boundary is hard to overstate. The risks of donation do not end at two years. The risk of kidney failure, hypertension and other complications accumulates over decades. Kidney disease, in particular, is silent for years. A donor who stops being tracked at two years has no systematic way for a problem to be caught. Programs have historically struggled even to meet the two-year standard: many donors, healthy and busy, do not return for visits, and programs have limited tools to bring them back.

Research suggests that donors who receive guideline-concordant follow-up care early do better in the long term, a finding that supports regular monitoring.³ But there is no national system ensuring that happens, no funding stream guaranteeing it, and no standard describing who pays for annual visits after the program’s obligations lapse.

Building your own follow-up

Because the system will not do it for you, you must. Arrange a primary-care physician who understands that you donated a kidney. Ask for an annual visit with a blood pressure check, a measure of kidney function (creatinine and estimated GFR), and a urine test for protein. Keep a copy of your donation records, your pre-donation labs and your surgical summary. Tell every new doctor you donated, and put it on every medical form. Avoid nonsteroidal anti-inflammatory drugs when possible, stay hydrated, keep a healthy weight, do not smoke, and treat high blood pressure aggressively if it appears. Consider enrolling in any donor registry or research cohort your program offers; the data you contribute may help the next donor.

What former donors are owed

Donors who later need a kidney have a safeguard that is worth knowing about: under current OPTN kidney allocation policy, prior living donors receive priority on the waiting list. That is a recognition that the system owes them something. It has been used rarely, which is good news, and it is the bare minimum of reciprocity. A just system would go further: it would cover donors’ health care related to donation for life, and it would treat their long-term health as a matter of public concern. A donor who has to chase a registry to find out how they are doing has been left behind by the system they helped.

1. Procedures to Collect Post-Donation Follow-up Data from Living Donors, OPTN: hrsa.gov/optn; OPTN Living Donor Committee materials: hrsa.gov/optn.
2. Additional Data on Long-Term Outcomes Incorporated Into OPTN Living Donor Data: hrsa.gov.
3. Long-Term Outcomes for Living Kidney Donors With Early Guideline-Concordant Follow-up Care: PMC9983079.

A husband wants to give his wife a kidney. His blood type will not work. In an earlier era the story would have ended there, with a silent drive home. Instead, a coordinator enters their names into a registry. Somewhere across the country, another couple has the opposite problem. A third pair fits between them. A man who has never met any of them agrees to start the chain. In the spring, four operations take place on one day, in three cities, and four people go home with working kidneys. Nobody gave to the person they came to help. Everybody did.

The problem it solves

Many willing donors are incompatible with their intended recipients, because of blood type, tissue type or a positive crossmatch, a laboratory test showing the recipient’s antibodies would attack the donor’s cells. Before paired exchange, those donors were sent home. Paired exchange turns an incompatible pair into a resource: if donor A cannot give to recipient A but is compatible with recipient B, and donor B can give to recipient A, the pairs swap. The logic extends to three-way exchanges, and then to long chains.¹

The chain

The decisive innovation was the non-directed donor, a person who gives to no one in particular, sometimes called a Good Samaritan donor. Such a donor can start a chain: their kidney goes to a recipient in an incompatible pair, whose donor then gives to the next recipient, and so on, until the last donor gives to someone on the deceased-donor waiting list, or the chain closes. A single altruistic donor may enable many transplants. The National Kidney Registry, founded in 2007, popularized the model and has facilitated a large share of U.S. exchange transplants; the OPTN also operates its own kidney paired donation program, developed from a pilot managed by UNOS.²

The practical steps

Exchanges are arranged through transplant centers that participate in a registry. If you and your donor are incompatible, ask your center whether it takes part in paired exchange and with which program, and ask whether your donor can enroll. Donors in an exchange may need to travel, or ship a kidney, since many programs now transport organs rather than people. Ask your program about how that works, what happens if a chain breaks, and what safeguards exist for the donor if something goes wrong in a link they are not part of. Ask also how long other pairs with your characteristics typically wait, since highly sensitized recipients and recipients with rare blood types may wait longer.

The ethics of the gift that travels

Paired exchange raises questions that a direct gift does not. Is a donor in an exchange giving to their loved one, or to a stranger? Both, in a sense, and some donors find that ambiguity harder than they expected. Is it fair for a donor in a chain to depend on others’ follow-through? Programs typically ask donors to commit in advance and have contingency plans. Is it fair to recipients in smaller pools? Registries try to maximize matches, but trade-offs between the number of transplants and fairness to hard-to-match recipients are real. And how should we treat the non-directed donor, whose motivation is altruism and whose gift is, in a sense, the engine of the whole system? They deserve the same protections, the same advocacy and the same long-term follow-up as any other donor.

1. NKF, Incompatible Blood Types and Paired Exchange Programs: kidney.org; NKR, Kidney Paired Donation Program: kidneyregistry.com.
2. UNOS Kidney Paired Donation Pilot Program Operational Guidelines: unos.org; National Kidney Registry’s donor chain model reported in Kidney News: kidneynews.org.

A kidney is not only an organ. It is also an economic event. When a patient receives one, a dialysis chair empties, a monthly Medicare payment stops, a clinic’s revenue shifts, and a stream of drug and follow-up spending begins somewhere else. None of the people involved is a villain. But when one asks why a pipeline that could grow has stayed small, the answer is not only medical. It is also arithmetic.

The 1972 bargain

In 1972 Congress extended Medicare coverage to nearly all Americans with end-stage renal disease. It was an act of moral clarity: no one in the country should die of kidney failure because they could not afford dialysis. It also created a single-disease entitlement with unusual features. Dialysis is paid per treatment. The industry that provides it consolidated over the following decades into a small number of large organizations that operate most outpatient dialysis facilities. The result was a system that does what it was designed to do, keeping patients alive on dialysis, extremely well, and that has, in structure, a financial interest in patients remaining on dialysis.

Transplant is, for most suitable patients, a better outcome than dialysis: longer life, better quality of life, and lower lifetime cost to the system. A rational system would push strongly toward transplant. For decades the incentives did not line up that way, and the share of dialysis patients who are placed on the transplant waiting list, or who receive a living donor transplant, remained far lower than medically justified, with persistent disparities. This is not a conspiracy theory. It is what financial structures produce when nobody is paid to change them.

The reforms of the last decade

The federal government has begun to change the incentives. In 2019 the Executive Order on Advancing American Kidney Health set goals for increasing transplant access and living donation, and directed new payment models. CMS tested payment models that reward dialysis facilities and nephrologists when patients receive transplants or home dialysis. In July 2025 the IOTA model began applying financial rewards and penalties to 103 kidney transplant hospitals based on transplant volume, matching efficiency and post-transplant outcomes, and requiring publicly posted living-donor selection criteria.¹

These reforms matter for living donors because transplant hospitals now have a direct financial reason to increase transplant volume, including living-donor transplants. That is a double-edged development. Done well, it means more programs investing in donor navigators, financial counseling, easier scheduling and better follow-up. Done badly, it can mean pressure to process donors faster and to loosen scrutiny. The difference will be determined by the independent safeguards of Chapter 6 and by whether the public pays attention.

Who profits from a living donor?

It is a fair question, and a guide committed to honesty should answer it. The donor is not paid. The recipient benefits. The transplant hospital is paid for the transplant, and now may be rewarded under IOTA. The surgeons are paid for their work. The recipient’s insurer, often Medicare, pays for the donor’s evaluation and surgery as part of the recipient’s costs. A dialysis provider loses a patient. Medicare saves money over time, since a successful transplant costs less per year than dialysis. In short, many institutions gain from the donor’s act, and the donor is the only party that is both unpaid and at risk. That is not an argument against donation. It is an argument for acknowledging whose sacrifice the structure rests on.

Independence and why it matters

This is a place where the Cold Ischemia Foundation’s independence is not decoration. When an organization advising donors and patients is funded by dialysis companies, pharmaceutical manufacturers or hospital systems, its advice is shaped, consciously or not, by those funders’ interests. We accept no money from any of them, and we encourage readers to ask the same question of any advocacy organization, including ours: who pays for this, and what do they want?

1. CMS Increasing Organ Transplant Access (IOTA) Model: cms.gov; Inside-Out Overview of IOTA, PMC: PMC12136648; Executive Order 13879 (July 10, 2019).

A federal investigator opens a file and finds what investigators often find: a rule, a deadline, and a gap between the two. The file is a composite; the pattern is not. A system built over forty years, run by a contractor, overseen by an agency, scrutinized by Congress in fits and starts, has always depended on the quality of the people inside it. The question of what happens when they falter is the question of oversight.

The organizations

The OPTN, the national network, is a public-private partnership: the government contracts for its operation and HRSA oversees it. The Scientific Registry of Transplant Recipients, maintained by a separate contractor, publishes outcome data on transplant programs and organ procurement organizations, and its public reports are the best tool a patient has for comparing programs.¹ CMS certifies transplant programs and OPOs and evaluates them under federal performance standards. States license hospitals and regulate insurance. Congress oversees them all, mostly through hearings and letters.

Why the structure has been criticized

For years, critics from inside and outside the field raised the same concerns about the OPTN’s structure: that a single contractor both made policy and operated the system, that governance was dominated by the members the network was supposed to oversee, that data were not transparent enough, that patient safety reporting was slow, and that conflicts of interest were not adequately managed. Senate and House inquiries documented failures in organ procurement and allocation, and the federal government acknowledged problems in the system’s oversight. Reports by Congress’s research arm describe the administrative and oversight issues in detail.²

The modernization

The response, enacted in 2023 and carried forward since, breaks the single-contractor model. Through 2025 HRSA established an independent, elected OPTN Board of Directors, separated the operations contractor from the policy-making structure, moved toward a multi-vendor model for the network’s technology, and arranged for direct collection of patient registration fees. HRSA also reported interviewing more than ninety stakeholders, including patients, donors, families and clinicians, as part of the process.³ These are real structural changes, and their effect on living donors will depend on whether the new bodies prioritize donor protection, which has historically been a lesser theme than recipient outcomes.

Your tools as a potential donor

You can compare programs. The SRTR publishes program-specific reports, including outcomes and volumes, searchable at srtr.org. Ask a program for its living-donor numbers: how many it performs, what proportion of evaluated donors it accepts, and what its follow-up completion rate is. Under IOTA, participating hospitals must post their living-donor selection criteria. If something goes wrong, you have channels: the program’s patient advocate, the hospital’s grievance process, the OPTN’s patient services, the state department of health, CMS, and your elected representatives. The Foundation’s Situation Room and Hub tools walk through them.

What independent oversight would look like

A living donor oversight function worth the name would have four features. It would be independent of the programs it monitors. It would publish donor-centered outcomes, including long-term follow-up, complications and out-of-pocket costs. It would receive and investigate donor complaints with real authority. And it would include donors on its governing board. Parts of this exist in fragments; the whole does not yet. The Foundation’s reform agenda in Chapter 22 asks for it.

1. Scientific Registry of Transplant Recipients: srtr.org; OPTN/SRTR Annual Data Report, American Journal of Transplantation.
2. Organ Procurement and Transplantation: Administration, Oversight, and Policy Issues, Congressional Research Service (R48426): congress.gov.
3. HRSA, A Year in Review: Advancing OPTN Modernization (January 2026): hrsa.gov; HRSA press release: hrsa.gov.

She cannot say when she decided. It was not in the waiting room, or at the dinner where her cousin told the family about the diagnosis, or on the drive home when she said nothing. It was sometime in the silence afterward, a slow recognition that the question had been answered before it was asked. This is how many donors describe it: not a decision but a discovery. The rest of the process exists to find out whether that discovery is sound.

Why people give

Motivations are mixed, and honest donors admit as much. Love is the most common: a spouse, a child, a sibling, a friend. Duty is close behind, a sense of what one owes the people one belongs to. Some give out of faith, some out of gratitude for their own health, some from a belief that having been lucky obliges them to be useful. Some give because they were asked, and found it harder to refuse than to agree. Others give from a need to be needed, or to prove something to themselves or to a family that has underestimated them. Few of these motives are shameful. All of them deserve examination, because a donation driven by guilt or by a need for approval can feel different, afterward, from one driven by clear choice.

The ambivalence that is normal

Donors are often told, or tell themselves, that doubt means they should not donate. This is wrong. Ambivalence is the ordinary state of a person contemplating a major, irreversible act on behalf of someone they love. The question is not whether doubt exists but what it says. Fear of surgery, worry about children, concern about money are practical problems with practical solutions. A feeling of dread at the thought of the recipient, or a gut sense of being cornered, is information of another kind. Programs screen for this, but the person best placed to detect it is you.

The family system

Donation never happens to an individual alone. It happens inside families with histories, alliances and silences. In some families, a single willing donor is the family hero; in others, the family’s unwillingness to say “no” to the sick person turns into pressure on whoever is healthiest. Siblings may compete over who will give; a spouse may be both the best medical match and the person with the most to lose. A donor may feel resentment toward relatives who did not step forward. The recipient may feel guilt, or anger at the loss of control, or fear that the gift will be held against them. Families that talk about this beforehand do better than those that do not. A social worker or family therapist can help, and many programs offer one.

The relationship after

The most underestimated part of donation is the relationship that follows. A gift of this size creates asymmetry. The recipient may feel indebted, or may feel entitled to guide the donor’s choices; the donor may feel responsible for the recipient’s health, with every lapse in adherence felt as a betrayal of the gift. When the transplant succeeds, the relationship may deepen. When it fails, the donor can experience grief, guilt and sometimes anger that no one prepared them for. Some relationships have strained or broken after donation. They should be talked about before, not after. Many programs recommend a conversation about what each person will do if the transplant fails, and about how the donor’s privacy will be protected.

1. Psychosocial characteristics of potential and actual living kidney donors: PMC10807153; The Psychosocial Evaluation of Living Kidney Donation: Time for Standardization in Practice: PMC11518646.

A kidney that functioned perfectly for six weeks fails. A donor recovers beautifully and then, a year later, develops a complication no one connected to the surgery. A recipient dies. A family divides. A donor is told that the cost of her hospitalization is not covered. These are the stories no pamphlet includes. They are also the reason the safeguards in this book exist, and the reason a guide that does not tell them is not a guide.

When the transplant fails

Not every transplant works. A kidney from a living donor generally lasts longer than one from a deceased donor, but graft failure does occur, from rejection, from disease recurrence, from surgical problems, or from causes no one identifies. Some failures are early and some are late. For the donor, the loss can be intense. The sacrifice was made, and the outcome it was meant to secure is gone. Donors in this position often struggle with grief and sometimes with guilt, an irrational but widespread sense that they should have done something differently. Programs that offer counseling in these moments make a significant difference, and donors should ask for it.

When the donor is harmed

Donor complications range from the minor to the serious. The great majority are temporary. A small number are permanent. A very small number involve death. The rate of perioperative death, about three per ten thousand for kidney donors, is low but not zero, and for liver donors higher. When a donor dies, the OPTN requires the recovery hospital to report the death within 72 hours of learning of it, if it occurs within two years.¹ The purpose is to learn from each case. The experience of the family left behind is rarely part of the data.

The financial consequences of a complication can compound the medical ones. Who pays for treatment of a condition arising from donation, particularly after the initial recovery period, is not consistently addressed by law or by program policy. A donor whose complication is billed to their own insurance may face deductibles, copays and denials. Others have had to fight their recipient’s insurer. A just system would resolve this in advance; the current one often resolves it by default against the donor. Ask the program, in writing, before surgery.

When the donor regrets it

Regret is real and under-discussed. Some donors regret donating because of a poor outcome, a strained relationship or a loss of status. Some regret not asking certain questions. Some regret it for reasons they cannot articulate. These are minorities, but they matter, and the system’s tendency to treat donation as an unambiguous good makes it hard for people who regret to say so. Peer support, counseling, and honesty about the fact that regret exists make a difference. A donor who has regrets is not ungrateful. They are a person who deserves care.

When the relationship breaks

The gift can transform a relationship or strain it. Some recipients struggle to accept what they have received; some donors resent the lack of acknowledgment; some families fracture over who gave and who did not. Silence and unmet expectations do much of the damage. A pre-donation conversation about what each person wants, and what each person fears, is the best prophylactic.

1. OPTN, Procedures to Collect Post-Donation Follow-up Data from Living Donors, and policy on reporting of donor deaths: hrsa.gov/optn.

Imagine a seminar room with four chairs. In the first sits a transplant surgeon, who believes that the surest way to protect donors is to restrict who may donate. In the second sits a libertarian philosopher, who believes that competent adults may accept any risk for any reason. In the third sits a patient on dialysis, who wants the kidney. In the fourth sits a donor, who gave, and has questions no one else in the room can answer. The seminar cannot be resolved. It can be conducted honestly, which is better than the alternative.

The four principles, and where they pull apart

Medical ethics rests on four widely accepted principles: respect for autonomy, beneficence (doing good), non-maleficence (avoiding harm), and justice. In most medicine they point the same way. In living donation they collide. Autonomy says a competent adult may choose to donate. Non-maleficence says a physician should not subject a healthy person to a risky operation with no medical benefit to them. Beneficence points toward the recipient, who will benefit enormously. Justice asks who donates, who receives, and whether the system is fair.

The traditional resolution holds that the donor benefits psychologically from acting on their values, and that this, together with rigorous informed consent, justifies the risk. It is a reasonable answer and not a complete one, since it depends on the donor’s choice being truly free and fully informed, the very things the safeguards in Chapter 6 try to secure.

The question of paternalism

Professionals have traditionally acted as gatekeepers, declining donors whose risk seems too high. Some ethicists now question how far that should go. If a fully informed, competent adult wants to donate despite a modest increase in risk, is a refusal respectful protection or condescending paternalism? Programs vary in their answers, which is partly why a donor turned away by one center may be accepted by another. The principled middle ground is transparency: a program that declines donors should say why, in writing, and apply its criteria consistently.

The question of payment, again

Chapter 5 set out the law. The ethical debate beneath it is whether any form of compensation, beyond expense reimbursement, could be consistent with a just system. Arguments against: exploitation of the poor, undue inducement, the commodification of the body. Arguments for: the status quo already depends on a form of exploitation, namely the uncompensated sacrifice of those who happen to have willing relatives; the poor already bear a disproportionate burden of kidney disease and of dialysis; and a regulated system could be safer than the black market it aims to prevent. The 2008 Declaration of Istanbul, signed by transplant professionals worldwide, opposes organ trafficking and transplant commercialism and calls on countries to be self-sufficient in organs. Reasonable people, and thoughtful bioethicists, disagree about how to apply it, and this book does not pretend otherwise.

Transplant tourism and the global frame

The shortage of organs is global, and so are the responses to it. In countries with weak oversight, a market in organs has flourished, with sellers often drawn from the poorest communities and receiving little of the proceeds or the aftercare. Americans who travel abroad to buy a kidney, and the brokers who arrange it, expose themselves to legal risk and exploit others. A guide to living donation in the United States has to say: do not do this, and do not accept an offer to do it. The path for a person without a donor in America is the waiting list, a paired exchange, and honest advocacy for a better system.

Justice and the question nobody wants to ask

The deepest ethical question may be the one least discussed: is it just that so much depends on the generosity of individuals? Every other life-saving medical intervention is funded by society. The living donor kidney is funded, in part, by the donor. A system that relies on individual sacrifice to address a collective failure is entitled to ask what else it could do. The answer will involve more deceased donation, better organ use, more prevention of kidney disease, better support for donors, and, at the end of the list, the compensation question. It should not begin there.

1. Declaration of Istanbul on Organ Trafficking and Transplant Tourism (2008, updated 2018): declarationofistanbul.org; Legal Issues in Payment of Living Donors for Solid Organs, American Bar Association: americanbar.org.

He has rehearsed the sentence in his head for six months and still cannot say it. He needs a kidney. His doctors say a living donor is the best option. He has a sister, two friends, a congregation, a workplace. He has pride, which is a form of fear, and a dread of becoming the person who asks. The sentence he cannot say is not complicated. The hardest part is the silence before it.

This chapter is for the patient. If you are the potential donor, read it anyway: it will tell you what the person who loves you is trying not to say.

Why asking is so hard

Most people who need a kidney do not ask. They do not want to burden anyone. They fear rejection, or fear acceptance, since a yes creates a debt. They fear the answer will change a relationship. They do not want to appear to be pressuring. They worry, reasonably, that someone will say yes out of obligation, and that the donor will be harmed. These are decent reasons, and they cost lives. Transplant programs, patient groups and hospitals now teach patients that asking, done well, is not begging.

How to ask well

Programs and patient educators converge on a similar set of practices. Start by sharing, not asking. Tell people how you are doing, that your doctors say a kidney from a living donor is the best option for you, and that you are letting the people close to you know. Make it easy to say no. Acknowledge that donation is not right for everyone, that it is entirely their decision, and that nothing between you will change if the answer is no. Do not mention your blood type in public requests: a person who is not a match could be deterred, and paired exchange can solve incompatibility. Give people a way to learn without telling you. The transplant program can speak to a potential donor privately, and you need not know their decision. Consider a donor champion: a friend or relative who learns about the process and speaks for you, a buffer that makes it easier for others to come forward. Use the right channels. Start with those closest to you, then widen the circle, to coworkers, your faith community, social media, your local news, as you feel comfortable.¹

Using social media without losing yourself

Social media can reach people you would not otherwise find. It also exposes you. Create a separate page or account for your search, so that your private life remains your own. Use a photograph and a real story: what treatment is like, how you feel, what you hope for. Posts with images attract more attention than those without. Be honest and be specific. Do not offer or accept payment for an organ. If a stranger contacts you, route them to the transplant program, which will protect both of you, and be wary of anyone who talks about money. The program, not you, should handle the evaluation.

For the person who is asked

If someone asks you, or tells you they need a kidney, you do not have to respond immediately. Say that you are glad they told you. Ask what you can learn. Take your time. You are allowed to say no, and nothing in this book suggests you owe anyone a kidney. You are also allowed to say yes, after you have done what Chapters 6 through 10 describe. If you want to help without donating, you can serve as a donor champion, help with the search, raise awareness, assist with paperwork, or drive. Many such supporters turn out to be as essential as donors.

1. How to ask for living kidney donation, Ohio State Wexner Medical Center: health.osu.edu; UChicago Medicine: uchicagomedicine.org; Temple Health: templehealth.org; Expanding Access to Living Donor Kidney Transplants Through Social Networks: PMC10209734.

Charters are strange documents. They claim to describe what already exists, and they are written because it does not. A person who has been harmed rarely reaches for a charter in the moment; they reach for it afterward, to see if what happened was allowed. This chapter is written for the moment before. Read it as the minimum a donor should expect, and as the standard to which every program, insurer, employer and policymaker can be held.

The charter

The Cold Ischemia Foundation proposes the following rights, drawing on existing law, OPTN policy and the best practices in transplant programs. Some already exist in law; others are aspirations. Each is stated plainly so that it can be tested against real programs.

How to use it

Take the charter into your first conversation. Ask the program which of these rights it honors, and how. Ask your employer, your insurer, your elected representatives. A program that welcomes the questions is a program worth trusting. A program that bristles may be telling you something. And if a right is not yet in law, that is not a reason to abandon it. It is the agenda of the chapters that follow.

A bill sits in a committee. Behind it is a coalition of patients, donors and advocates who have visited legislators for years, with stories, spreadsheets and a patience that nobody who has not tried it can fully appreciate. The bill is unglamorous. It says that a person who gives a kidney should not lose their job or their insurance for doing so. If it passes, no one will notice. That is how you know the reform worked.

The agenda in brief

The following proposals are the Foundation’s own reading of the problems in this book. They are grouped by the kind of change required. Each is framed so that its supporters and critics can argue about specifics.

1. Make donors whole, automatically

Replace application-based reimbursement with automatic coverage of donation-related costs, including lost wages, travel, lodging, and dependent care, without income tests, funded at a level that meets demand. Pair it with a simple prospective process so a donor knows what will be covered before committing. This builds on the 2020 rule and the National Living Donor Assistance Center and removes the means-testing that makes reimbursement an uncertain gift in its own right.

2. Pass the Living Donor Protection Act

Enact the federal protections now moving through Congress: bar life, disability and long-term care insurers from discriminating against donors, and codify job-protected leave under FMLA for donors in private and federal employment. Extend leave protections to workers at smaller employers. Consider a federal paid-leave floor modeled on the existing thirty days for federal employees. The bill was reported out of the Senate committee in February 2026; the remaining step is a floor vote and the House.¹

3. Guarantee lifetime follow-up and coverage for complications

Extend OPTN follow-up requirements beyond two years, create a national living donor registry with voluntary lifelong participation, and establish a federally backed guarantee that donation-related complications are covered for life without cost to the donor. Fund annual follow-up visits through the recipient’s coverage, a dedicated fund, or both. A donor should never have to prove that a complication arose from donation to receive care.

4. Strengthen the independent advocate

Require that independent living donor advocates report outside the transplant program’s administrative chain, receive standardized training and certification, and publish aggregate, anonymized reports of their activity. Give donors a right to a second, outside consultation at no cost. The advocate is the one protection built specifically for donors. It deserves real independence.

5. Publish donor-centered data

Require every program to publish annually: the number of donor inquiries, evaluations started and completed, donors approved and declined, withdrawals and the reasons, surgeries, complications at discharge, six months, one year and two years, longer-term follow-up completion, and out-of-pocket costs reported by donors, broken down by race, income and geography. Treat donor drop-out as a performance measure. IOTA’s publication of living-donor selection criteria is a start, and it should be extended to outcomes.

6. Add donors to governance

Ensure the new OPTN Board and its committees include living donors and former donors with voting power, and that patient and donor representatives are not outnumbered by the entities they oversee. The 2025 restructuring created an elected Board; the question now is who is on it.

7. Align payment with donor welfare

Under IOTA and any successor models, tie financial rewards not only to transplant volume but also to donor experience measures: completion of follow-up, reported financial burden, complications and donor-reported satisfaction. A hospital should not earn a bonus for transplants that left donors worse off.

8. Invest in prevention and in deceased donation

The living donor is an answer to a shortage that other measures should shrink. Invest in kidney disease prevention and early detection, in reducing organ discard, in improving deceased donor conversion, and in increasing referral to transplant. A living donor system must not be a substitute for a functional deceased donor system.

9. Keep the line on payment, and move the argument forward

The Foundation does not advocate legalizing payment for organs. It does advocate exhausting every measure that would remove the costs of donation first, and encouraging the research and pilot evaluation that would let the country settle the compensation debate with evidence, not slogans.

How a reader can act

Read the bills. Write to your representatives, with specifics. Share your own story or someone else’s, with permission. Ask your transplant program whether it publishes its numbers. Volunteer with organizations that keep the pressure on. Document what happens to you or someone you know, with dates and names, in the Foundation’s tools or elsewhere; documented experience is the evidence that policy changes require.

1. S. 1552, Living Donor Protection Act of 2025: congress.gov; H.R. 4583 and H.R. 4582; National Kidney Foundation on Senate HELP Committee action: kidney.org.

The last chapter of a book like this is not a conclusion. It is a handoff. You have read about the history, the law, the money, the risks and the ethics. Now you have to sit in a room with a form. This chapter is the one to bring with you.

Phase one: before you volunteer

Talk to the person who needs the kidney, and to someone else. Decide whether you want this freely. Learn the basics of the evaluation and risks. Tell your closest person the truth. Read the program’s published criteria, if any. Check SRTR for the program’s outcomes. Understand that you may stop at any point.

Phase two: before your evaluation

Call the program and ask the questions in the box below. Apply to NLDAC if you may be eligible, before the evaluation. Ask your employer, in writing, about leave. Ask your insurers about the effect of donation on your coverage and consider adjusting coverage before you are evaluated. Build the donor budget from Chapter 8. Arrange a friend or relative to attend the evaluation with you.

Phase three: before you sign the consent

Read the consent form at home, not in the office. Highlight what you do not understand and ask about it. Confirm that you have met your independent advocate alone. Ask for your personal risk estimate. Ask what happens if your recipient’s transplant fails, or if you develop a complication. Ask for the program’s plan, in writing, if costs not covered by the program arise. Confirm that you have time to think. Make sure that your yes is yours.

Phase four: surgery and recovery

Prepare a caregiver and a backup, transport, time off, and a plan for children and pets. Know the warning signs that mean you should call the program. Take the recovery seriously: do not return to heavy lifting early, avoid NSAIDs, keep follow-up appointments. Accept support from the social worker and, if available, a peer.

Phase five: the rest of your life

Choose a primary care doctor who knows your history. Arrange yearly follow-up: blood pressure, kidney function and urine protein. Keep a copy of your records. Tell every future doctor and every form. Keep your weight and blood pressure healthy. Avoid kidney-stressing drugs. Join a registry or research cohort if one is available. If you develop a complication, document it, notify the program, and ask who pays. If you are ever harmed, use the channels in this book. Tell your story, if you want to, to someone who can change the rules.

A last word

This book began with an arithmetic problem: a list that grows faster than the supply. It ends with something less arithmetical. The people who give the most to this system are, in the end, individuals who made a private decision in a quiet moment, and who then entered an enormous machine built by others. The machine can be improved. It has been improved before, because people who gave, who received and who watched demanded it. If you are one of those people, or are about to become one, the Foundation’s job is to make sure the machine knows your name.

— The Cold Ischemia Foundation
Ellenton, Florida

The kitchen smells like coffee someone forgot. On the table: a calendar with six weeks of colored squares, a list in three different handwritings, a phone charger nobody owns. Dana does not remember when the circle formed. Her sister-in-law took the hospital drives. A neighbor she barely knew took the dog. Her brother’s friend from work started a group chat called “Ray’s Kidney,” which made everyone laugh for the first time in a year. Nobody called it a community. It was one anyway.

We started this book with where you stand. We end with who stands with you, because the evidence from every corner of this field says the same thing: the donors, and the patients, who do best are rarely the ones with the best surgeon. They are the ones with the best circle.

Why a tribe, and not a hero

The popular story of living donation is a lone act of courage. The honest story is a logistics problem solved by many hands. Someone drives. Someone cooks. Someone reads the insurance letter at the kitchen table and says, “wait, what does this paragraph mean?” Someone sits with the recipient while the donor is in recovery, so the donor is not also the caretaker. A donor with a circle is protected from the commonest harms: financial surprise, isolation, and the strange, quiet grief that can follow a gift. A donor without one carries it alone, and the system, which has little capacity for the long tail of a donor’s life, will not notice.

The five roles of a good circle

The Anchor. One person whose only job is to attend the evaluation with you, take notes, and ask the questions you forget. The Navigator. Someone good with paper, who tracks insurance, leave, reimbursement and deadlines, and who reads everything before you sign. The Steward. The person who handles daily life during recovery: meals, kids, pets, rides. The Witness. A friend, ideally another donor, who has no stake in the outcome and will tell you the truth, including “you do not have to do this.” The Voice. Someone willing to speak for you if you cannot, including to the program, the employer or the family member who is pressing you. You can hold more than one role in your circle; a good circle holds all five.

The four rules of a circle worth belonging to

Trust, earned in small things. Choose people who show up for the unglamorous tasks. Transparency, even when it is awkward. Money, medical facts, feelings about the recipient: say them out loud. Secrets are where pressure hides. Reciprocity, without scorekeeping. The recipient’s family will want to give back; let them, in ways that do not feel like payment. (Federal law forbids payment for an organ; it does not forbid a casserole.) Exit, always. A circle that cannot tolerate a person saying “I have changed my mind” is not a circle, it is a debt.

Finding others who have been here

Peer support exists, and it matters. Some national kidney organizations run peer-mentoring programs that match prospective donors with people who have already donated; your transplant program can usually connect you with a former donor, and many programs host donor support groups. Ask for a conversation with someone who gave a kidney two or more years ago, because the first month tells you about the surgery and the third year tells you about the life. We will not pretend our hub is the only place for this. But if there is a gap, a state with no donors’ circle, a program with no peer network, an employer with no leave policy, the work of filling that gap is the work of the Cold Ischemia Foundation, and the work of anyone who reads this far.

What we owe each other

We founded this organization on a simple conviction: nobody should do this alone, and nobody should be surprised by what the system does to a person who gave. That conviction is not sentimental. It is a design principle. It says that a better system would treat donors as members of a community of care rather than as inputs to a process, and that the people who have been through it, not only the institutions that supervise it, should help write the rules.

Whatever you decide, you now know where you are in time and space, who else is in the room, and what you are owed. That is not everything. It is, we hope, enough to take the next honest step.

— Cold Ischemia Foundation
Ellenton, Florida · October 2026

1. Peer-mentoring programs and donor support: ask your transplant program; national kidney organizations operate peer-support services (for example, the National Kidney Foundation’s peer program); confirm current availability at the source.
2. Prohibition on valuable consideration for organs: 42 U.S.C. § 274e; see Chapter 5.