You Can’t Take It With You

Thirteen people will die today as they wait for a kidney transplant. Is it time to change how we think about living organ donation?

Chuck Hampton may be 73, but he exudes the pep and verve of a TV aerobics instructor and the perpetual delight of someone to whom every glass appears half full. He has almost 4,000 friends on Facebook; some call him “the mayor of Brown.”

As the welcome center specialist for Brown Athletics, Hampton has spent the past 17 years sharing his irrepressible joie de vivre with generations of Olney Margolies Athletic Center visitors—coaches, students, alumni, parents, donors, even kids attending summer sports camp.

“This is my comfort zone,” he says, his gaze sweeping across Ittleson Quad. “If I was a millionaire, I’d still come to work for free.”

Gastroenterologist Colleen Kelly, MD, an associate professor of medicine, is a longtime OMAC habitué. A member of a running club that includes a few other Brown docs, she looked forward to Hampton’s warm, garrulous greeting when she arrived for early-morning indoor practice. She missed him, even worried about him during the COVID-19 lockdown. In November 2021, returning to the track for the first time in a year and a half, she was so happy to see him she teared up and gave him a hug.

That’s when she noticed the bulge in his left forearm. It was an arteriovenous fistula, a surgically created connection between an artery and a vein that enables a patient to undergo hemodialysis, a life-saving treatment that cleanses the blood outside the body when the kidneys no longer can. To Kelly the swollen vein could only mean one thing: Hampton’s kidneys were in serious trouble.

“The first thing that popped into my head was, ‘I’ll just give him mine,’” she recalls. She spent the next few months mulling over the idea, researching living organ donation, and discussing the possibility with her husband and family members. Meanwhile, she noticed, Hampton was looking sicker and sicker. “He tried to put on a good face, but he didn’t have that same bounding energy,” she says.

In one of those you-can’t-make-this-up coincidences, another member of the running club was Paul Morrissey, MD, a professor of surgery, the director of the Division of Organ Transplantation at Rhode Island Hospital—and Hampton’s transplant surgeon. He and Kelly were stretching one morning in the spring of 2022 when she said she had a question for him. Even before she could pose it, Morrissey replied with a smile, “Yes, I’ll take your kidney for Chuck.”

Kelly soon found herself on the time-consuming, at times taxing journey toward living donation: months of evaluations to assess both her physical and mental fitness to be a donor, as well as blood and tissue testing to determine compatibility with Hampton. Kelly’s enthusiasm and commitment never wavered during the months leading up to the green light. But entering the hospital on the November morning of the transplant, she was suddenly struck mute with fear. One of the last sounds she heard before going under was Hampton’s familiar voice coming from behind a curtain in a pre-op area a few bays over, where he was chatting with the nurses. “That was very soothing,” she says.

Though recovery hasn’t been without challenges for each of them, the transplant was a success. For Kelly, it also feels like mission accomplished: “The world is such a better place with Chuck. We need him in it.”

Deadly Shortfall

The kidney is the most transplanted of the solid organs, far ahead of the liver, pancreas, heart, and lungs. Since the first successful human-to-human kidney transplant, in 1954, the procedure has become much more common: in 2022, kidney transplants exceeded 25,000 for the first time in this country. In the first half of this year, more than 14,000 kidneys were transplanted. That sounds like a lot, but by the end of 2023, more than 18,000 patients will have been added to the national waitlist.

Kidney disease affects some 37 million Americans—that’s 1 in 7 adults. (Perhaps unsurprisingly, how it affects them differs widely by race. See sidebar, page 25.) The most common risk factors are diabetes and high blood pressure. Signs of faltering kidney function are pernicious and nonspecific, and include fatigue and loss of appetite, which is why many people don’t even know they are sick until their illness has progressed to end-stage kidney disease. At that point they require dialysis to filter waste and excess fluid from their blood, balance the minerals in it, and control their blood pressure. Eventually, they’ll need a kidney transplant to survive.

Claire Kassakian MD’09 RES’12 F’14, a nephrologist practicing in Portland, OR, cares for patients with both chronic and end-stage kidney disease. “Dialysis is a miracle, but man, it’s an ugly miracle,” she says. “Validating that is crucial. I tell my patients that if it feels really hard, it’s because it is really hard.” Being tethered to a machine three times a week for four hours at a time can be “barbaric and grueling,” she says.

Seeing patients return to her care with a newly transplanted kidney is “one of the most powerful things” she experiences in her practice. Take the 38-year-old woman whose longstanding type 1 diabetes had left her legally blind and prone to intermittent infections: despite being a high-risk candidate, thanks to her fortitude and Kassakian’s advocacy, she was transplanted. “I will never forget the joy of seeing her in
the office when she came back in with her new kidney,” Kassakian says. “Being part of that process is an honor.”

Today more than 90,000 Americans need a new kidney. Depending on where a patient lives, the wait time varies from three to five years, and it can be much longer. During those years, Kassakian says, a patient might be inactivated on the transplant list as they become sicker and sicker over time as their medical decline becomes more dynamic with multi-organ failure or evolving frailty. Every year, 5,000 individuals die while waiting. There simply aren’t enough kidneys to go around. Or are there?

Expanding the Pool

Almost four decades ago, in 1984, Congress passed the National Organ Transplant Act to address America’s organ shortage. NOTA established the Organ Procurement and Transplantation Network, a national registry for organ matching, and mandated that OPTN be managed by an independent contractor paid by the federal government. Since 1986, that contractor, the United Network of Organ Sharing, has eluded accountability to the Health Resources and Services Administration, the agency responsible for it, while enjoying monopoly power over the nation’s transplant hospitals and organ procurement organizations, or OPOs. In almost 40 years the contract has never once been put out to bid.

In recent years research, investigative reporting, incriminatory hearings in both houses of Congress, and a scathing report by the Senate Finance Committee have exposed just how sick America’s transplant network has become. In one SFC hearing, Sen. Elizabeth Warren, D-MA, declared, “UNOS is 15 times more likely to lose or damage an organ in transit as an airline is to lose or damage your luggage.”
Money laundering, glaring racial bias, misuse of taxpayer dollars, and 28,000 viable organs (including 30 percent of viable deceased donor kidneys) wasted each year are among the appalling revelations. Of the nearly 60 OPOs—the organizations charged with routing organs from deceased donors to their intended recipients—the vast majority were found to be underperforming or failing. SFC Chair Ron Wyden, D-OR, condemned UNOS for “gross mismanagement and incompetence.”

Last March, the Biden administration took a big step toward overhauling the system. It designated $67 million of its proposed 2024 budget to be put toward modernizing outdated technology, improving governance, increasing transparency, and enhancing quality and innovation. And in September, President Biden signed into law a bipartisan bill that gives HRSA the right to award multiple contracts to support OPTN’s operations, fostering competition and effectively ending UNOS’s monopoly. The hope is that more organs will find their way into the bodies that so desperately need them.

Many believe another way to increase the number of organs available for transplant is to adopt a national opt-out system, also known as presumed consent, whereby adults are by default considered potential donors unless they object. An opt-out law came into effect in England in 2020 following the widely publicized death of a 9-year-old girl killed in a car crash, whose heart saved the life of a 9-year-old boy; Scotland followed suit the following year. In the US, where potential donors must opt in (picture the ♥ on your driver’s license), 90 percent of adults believe in deceased organ donation, yet barely 60 percent are registered donors.

Studies have shown, however, that presumed consent alone isn’t enough. Spain saw little improvement in organ donation numbers after implementing opt-out legislation in 1979. What has made a difference, though, is the government’s creation, in 1989, of a national transplant system that placed qualified donor coordinators in every hospital. Today Spain has the most organ donors per million population in the world. The average wait time for a kidney is counted in months, not years.

Another way to improve transplant numbers is to make the standards for donors and donated organs less restrictive. Livers from deceased donors who were at some time infected with hepatitis C virus infection have long been transplanted in patients infected with HCV, for example; since HCV has become treatable, such livers are now used in uninfected recipients as well, so fewer patients are dying on the waitlist. A 2020 study in the Journal of the American Society of Nephrology showed that in one year, nearly 500 kidneys that were discarded due to “abnormalities” were comparable to the same number that had been transplanted in France, with success.

Other studies have shown that a patient who receives a less-than-perfect kidney sooner has a better outcome than someone who waits longer for an “ideal” one, and certainly than someone on dialysis. These Expanded Criteria Donors may be older, have one or two kidney-compromising conditions, or have donated after circulatory death as opposed to brain death.

Scientists are also exploring the use of cryoprotectants—fluids that enable organs to be kept below the freezing point and then rewarmed—to significantly lengthen the amount of time an organ can be stored before being implanted. A Swedish research group is attempting to create human lungs using 3D printing. And then there’s the prospect of xenotransplantation—implanting animal organs in humans. In recent years headlines have touted the “successful” transplantation of kidneys from a genetically modified pig into a brain-dead patient; in another experiment, a kidney from a genetically modified pig was attached to a brain-dead patient and functioned normally.

Transplant nephrologist Reginald Gohh, MD, is a professor of medicine and, since its inception in 1996, medical director of the Kidney Transplant Program at Rhode Island Hospital. As an expert on the immunosuppressive medications required to prevent rejection after transplant and their effects on different patient populations, he sees the pig experiments as proving xenotransplantation’s feasibility, but believes it is unlikely to be a viable option for at least a decade. “The amount of immunosuppression required for these models is in the thermonuclear range,” he says. “A living patient couldn’t withstand it, and it would make no sense for their quality of life.”

More beneficial in the immediate term, he says, would be referring patients to transplant teams for evaluation long before they’re facing the distressing prospect of end-stage kidney disease and the specter of dialysis. “I’ve had discussions with Blue Cross Blue Shield here [in Rhode Island]to try to get people sent to our clinic at an earlier point in their kidney disease timeline,” Gohh says, “so that they’re better prepared and not so stressed when the time comes to arrange for a living donor if and when they progress to end-stage kidney disease.”

Homegrown Solution

You could say that in this country a vast supply of kidneys lies right under our noses. In 2022, in addition to nearly 15,000 organs taken from deceased donors, almost 6,500 organs, or 15 percent of all donations, were given by living donors—most of them kidneys. Increasing living donations would, of course, help chip away at the waitlist. What’s more, because kidneys from living donors have been thoroughly vetted—unlike the kidney harvested from a motorcycle crash victim, say—they come with more and longer-lasting benefits: 98 percent of living donor kidney transplants are successful, as opposed to 94 percent for deceased donor transplants. And living donor kidneys last about 20 years, so a patient will be less likely to require dialysis and need fewer subsequent transplants. But raising the number will mean convincing significantly more healthy people to offer up a kidney while they’re alive.

One way to do this would be to remove barriers to the donation process. Many potential donors are under- or uninsured; informing them that Medicare covers transplant costs for the recipient and donor might lead more people to consider it. Others fear negative repercussions from their insurance companies or employers, or simply cannot afford to take the necessary time off. The Living Donor Protection Act is a bipartisan bill that aims to promote living donation by protecting donors against insurance discrimination (through denial of coverage or higher premiums) and job loss. It also seeks to add living organ donation as a preexisting health condition to the Family and Medical Leave Act of 1993. A version of it has been introduced every few years since 2014, but it has yet to be made into law.

Kassakian (who, despite having two young children and a busy practice, earlier this year tried to donate a kidney to a member of her husband’s family but wasn’t a match) stresses that raising public awareness about the relative safety of donation in addition to organ scarcity is key. “I tell people we effectively need a reliable pony to get around, but we’re born with two Clydesdales,” she says, vividly illustrating the redundancy of a second kidney for most healthy people. “If people understood that they could freely and safely give a piece of themselves that would never hurt them but would recreate someone’s life, who wouldn’t want to do that?”

That was the reaction Stephanie Krusz MD’94 had when she learned in 2020 that Glen Rodrigues, the brother of her good friend Brenda, was nearing kidney failure. “Brenda mentioned Glen was A positive and I got goosebumps. I thought, I’m A positive. I could probably do this,” Krusz recalls.

A busy primary care doctor with a patient roster approaching 2,000, Krusz was determined to donate. She somehow found a way to wedge the numerous test appointments into her already packed schedule, and even worked to lower her slightly high blood pressure. During 2021, however, Rodrigues’ health deteriorated several times—COVID, pneumonia, heart attack, stroke, pericardial tamponade. At long last he stabilized, and in September 2022, they underwent the procedure. “I went in on a Wednesday and was back to work on the following Tuesday,” Krusz says. “At first I was sore as heck, but now I feel amazing, better than I thought I would.” Six months later, she completed the New Bedford, MA, half-marathon.

Today Krusz is eager to talk about living donation with colleagues as well as her own patients, many of whom have chronic kidney disease. (After Krusz donated to Rodrigues, one of her patients donated a kidney to her husband.) She says she would do it again if she could. “You have no idea how good it feels when I get a text from Glen in the morning saying, ‘I woke up.’”

Altruism is Not Enough

Another approach, more controversial, entails recognizing that there will never be enough good Samaritans to move the needle on organ supply and, therefore, compensating living donors. NOTA made the exchange of money for organs illegal, as it is in most countries. Admittedly, it’s an idea that causes a visceral reaction in many people. Opponents cite religious or philosophical beliefs about the sanctity of the body, fears of exploiting the poor or over-privileging the rich, and other reasons.

Sally Satel MD’84, a practicing psychiatrist and senior fellow at the American Enterprise Institute, has long been a vocal proponent of compensation. Since 2006 she has received two kidneys, each from a different friend. But while she’s deeply grateful for their generosity, she deplores the “romanticization of altruism,” which, she says, distracts from the development of more effective, pragmatic policies that would make a difference.

“I’m a poster child for altruism,” she says. “But altruism is not enough.” She notes that unlike OPOs, transplant centers, surgeons, and recipients, “the only person [in living donation]who gets nothing is the one who makes the sacrifice and takes the risk.” In a 2012 article in the American Journal of Transplantation, she and her co-authors called out what they see as an arbitrary taboo, writing that “there is no other context in which it is stipulated that something urgently needed must be given without payment or not given at all.”

In that paper, the authors lay out what they believe are ethically acceptable guidelines for a system of incentivization: disincentives must be removed (donor expenses and lost wages must be reimbursed and disability and life insurance must be provided); donations must be anonymous and non-directed; transplants must occur in waitlist order; and the incentive, whatever form it takes, must come from the state, not private payers (and certainly not the recipient).

Perhaps Satel’s most compelling pro-compensation argument is economic. In their paper The Kindest (Tax) Cut, Satel and economist Alan D. Viard propose a plan for offering a federal tax credit, to be paid out over years, of $50,000 per living donor (or $5,000 per deceased donor). How could the government begin to pay for such an expense? “Dialysis,” Satel says, pointing out that America’s half-million dialysis-dependent
patients cost Medicare $36 billion a year. (Indeed, while they represent 1 percent of Medicare patients, patients on dialysis account for 7 percent of Medicare’s entire budget.) Even with the projected combined cost of federal tax credits to donors, a rise in the number of transplant operations, and post-transplant medical expenses, Satel and Viard estimate their plan would save the government $12.6 billion a year—while also saving more lives.

Resistance to donor compensation—including, to Satel’s irritation, from the National Kidney Foundation, not to mention dialysis providers—has stymied efforts to test whether regulated payments are a viable way to increase organ supply in the real world, something that an article in the Annals of Internal Medicine called for back in 2010. Even the American Society of Transplantation is open to “careful study, debate, and exploration of [financial incentives]in appropriate venues and targeted research,” according to its position statement. Some lawmakers have been trying to push through legislation that would kick that off. One such bill before Congress is the Organ Donation Clarification Act, which would at least allow the government to run “pilot programs to test the efficacy of non-cash benefits.” So far, it hasn’t passed into law.

Determined but weary, Satel says, “It’s been the same system for so long. We don’t have any more time to waste.”

As for Hampton, he’s on a mission to honor Kelly’s kidney. “I don’t know how I can pay for it,” he says, “but if I can make people smile and feel good, that’s what I got to do, and do my best every day.”