There's an Organ Donor Crisis in America — and One Man's Struggle to Survive Reveals Why
After a few hours of stilted small talk and stand-up comedy, Geoff Hamilton parted ways with his date. It was a Friday night in New York City in August 2007. Hamilton, then a 21-year-old rising senior at Princeton University, had wrapped up his 10-week summer internship at a Manhattan tech firm earlier that day.
He'd already caught an Uptown 2 train toward his family's apartment when he noticed a missed call from a private number. Thinking it might be important, he got off early to check his voicemail.
Change of plans: Hamilton wasn't going home for the night. He was going to the hospital. After six months on the national heart transplant list — following five years of intravenous drugs, mechanical heart pumps and daily shot-glasses filled with pills — Hamilton was finally getting a new heart.
Hamilton was extremely lucky.
Right now, there are 123,000 people waiting for organ transplants in America, according to the United Network for Organ Sharing. Many of them will spend months or years idling on death's doorstep before getting a call like Hamilton got at the end of that otherwise unremarkable Friday. From 1988 to 2012, the number of transplants performed each year more than doubled, but the number of hopeful recipients grew almost eightfold. The resultant organ shortage has meant that 21 people die every day waiting for transplants that might have saved their lives, according to the Organ Procurement and Transplantation Network.
At its heart, saving people from organ failure is a numbers game: More organs would translate to shorter wait times for transplants and fewer overall deaths. But organs come from other people. And despite the fact that a single donor can save eight lives and improve up to 50, people are not always keen to give away their body parts, even after they've died. As a result, a fiery ethical debate regarding how to expand the donor pool has raged for over 30 years without resolution. Now, a vocal group of doctors, religious leaders and ethicists think they have the solution: incentivizing donation through compensation. In other words, they want to start paying people for their organs.
The potential fallout of organ exchange is easy to imagine. Compensating donation, some claim, would generate more organ trafficking, which can include forced removal, under-the-table operations and empty promises of payment. And we don't want to create a system in which lower-income people feel obligated to shill body parts on a black market to pay the bills.
Then again, it just might work. The only country that currently has a regulated organ exchange is Iran, but the system, implemented in 2010, has gone well: Currently, no Iranians are waiting for organs. The U.S. is not Iran, but the success of a smaller-scale exchange is intriguing.
At any rate, it's a conversation we need to be having now. Organ failure affects a diverse spread of people suffering from both chronic illness and acute diseases. What's more, organs don't last forever, as Hamilton well knows. Only five years after his first transplant, his donor heart gave out, and he found himself back on the list.
The beginning: Hamilton's ordeal first began during his sophomore year at Stuyvesant High School in downtown Manhattan, when he was diagnosed with systemic scleroderma, a rare and poorly understood autoimmune disease marked by abnormal growth of the body's connective tissue. The primary symptom of scleroderma is inelastic skin that restricts body movement; Hamilton couldn't bend his knees past 90 degrees or open his mouth wide enough to eat a sandwich. The disease does more permanent damage, however, by ransacking internal organs. Within five years of diagnosis, 80% of sufferers die from organ failure complications.
Hamilton beat the odds. He got through high school and most of college thanks to an implanted heart device and a strict regimen of steroids, immunosuppressant injections and monthly chemo sessions. But he still had to live cautiously. A raucous social life just wasn't in the cards.
"I was envious of that typical frat lifestyle. I certainly wasn't getting laid and, you know, I wasn't partying," said Hamilton. "But, to the extent that I could enjoy [college], I did."
His first transplant came in the nick of time, five years and four months after he first heard a doctor say the word "scleroderma."
After surgery, Hamilton got five and a half years filled with the carefree socializing he coveted. He still took the steroid cocktail that he'll always have to take, plus some new medicine because his donor heart, a tad too big, raised his blood pressure. Otherwise, he describes his life after college much the same as would anyone else — as though another person's heart wasn't pumping blood through his body. He drank. He went on dates via Match.com. He had a revelatory mushroom experience. Hamilton was running around New York on a hand-me-down heart but no longer, at least in his mind, on borrowed time.
It didn't last. For young adults who hope to see old age, heart transplants typically aren't permanent solutions. Hamilton's doctors told him that his donor heart might fail within 15 to 20 years, but it was on New Year's Eve 2013, only five years after his first surgery, that things started to go south. After two weeks of convincing himself he just had a stomach virus, his ankles started to swell. Water retention is a classic sign of heart failure; he knew his transplant was giving out. So he went back to the hospital and straight to the top of the transplant list.
In April 2013, in the transplant ward at Columbia Presbyterian, Hamilton sat propped up in his hospital bed with his laptop open on the tray table and a brown teddy bear tucked under his right arm. At 6 feet, 2 inches and 135 pounds, he didn't come close to filling out his already rangy frame.
His hospital room was toasty, but Hamilton sat under a thick cotton blanket, wearing a zip-up hoodie and black gloves to stay warm. The circulatory disorder Raynaud's syndrome, a leftover present from scleroderma, flared up when Hamilton became sick, leaving him with cracked, blue fingertips.
As Hamilton made his way through downloaded episodes of TV shows, battery-powered mechanical heart pumps called VADs were keeping him on the right side of death. He was hoping to get out of the hospital in time for his five-year college reunion in May. But there was a lot standing in between him and a new heart. At a minimum, Hamilton's donor would need to share his O blood type and stand as least as tall — heart size corresponds roughly to height. Recipients can live on hearts that are bigger but not smaller than their own.
But beyond these medical requirements, the biggest obstacle was still supply.
The clock is ticking: The U.S. organ supply is limited in part due to its "opt-in" donor consent policy, which means that people are presumed not to be donors unless they specifically register as such. Additionally, the decision to donate isn't ironclad. If families protest donation after a donor's death, doctors typically respect their wishes. Given that this decision must immediately follow the declaration of death, it's not uncommon for grieving family members to step in.
For the sake of successful transplantation, it's also best to get a heart from nearby — because once a heart comes out of one body, it has just four hours to get into another one. Weaker hearts spoil faster but, in general, the less time a heart spends disconnected — called its "ischemic life" — the better. Complicating all these factors is the fact that doctors must run an additional compatibility tests on patients like Hamilton, who, because they've already had transplants, are more sensitive to rejection. These tests, while necessary, take up more of the four-hour window.
Getting a nearby heart means fewer available donors and, unless luck intervenes, presumably a longer wait time, especially when you live in a heavily populated state with a paltry donor pool. New York has one of the lowest donor rates in the country, but one of the longest transplant lists. Only 22% of New Yorkers are registered donors, compared to 48% nationwide. And the numbers were even lower a few years ago, which translated to someone in New York dying every 15 hours waiting for an organ.
In short, Hamilton's odds were not looking good. But in October 2013, after 10 months in the hospital, Hamilton got his second heart transplant. He became one of 10 New Yorkers between the ages of 18 and 34 who received heart transplants that year, according to the United Network for Organ Sharing. Four others died waiting.
The same month that Hamilton got his second transplant, New York became the second state, after California, to reform its opt-in consent policy. "Lauren's Law" tweaked the language on DMV forms to tell applicants that filling out the donor consent section was obligatory rather than optional. (Despite the statement, there are no actual legal repercussions for skipping the question.)
NYS Application Form after Lauren's Law:
The law preceded a spike in donor registration, with 13,000 New York residents becoming donors within the next year. But while an increase in donors is by all means a good change, the uptick hardly boosted the actual rate of donations. So if we want to close the supply-demand gap in organ donation, fiddling with consent policies isn't going to cut it.
So how do we get more actual transplants?
There are a few possible solutions. For starters, the U.S. could become a default opt-out country. Across the board, donation rates are higher where people are presumed to be organ donors unless they explicitly state otherwise.
Then again, some people believe that organ donation is too big a decision to make by default. If people don't affirmatively decide to donate, according to this line of reasoning, then their organs shouldn't be up for grabs. What's more, not everyone is convinced that it would do all that much to change the donation rate in the U.S. Studies have shown that cultural beliefs and medical distrust, among other factors, contribute heavily to positions on donation. Still, countries that have switched from opt-in to opt-out, including Spain, have seen donor rates increase.
Money: The more controversial proposal is to incentivize organ donation through monetary reward. As of now, the sale of organs is a crime. By law, donation must be an entirely altruistic act. The 1984 National Organ Transplant Act prohibits organ donors from receiving any "valuable consideration," which covers everything from cold, hard cash to a Starbucks gift certificate.
A group of over 300 doctors, religious leaders and ethicists are trying to change that, writing in an open letter to President Barack Obama last November:
"Sadly, transplant policy has been governed by an unsubstantiated assumption: that donors cannot receive benefits for donating without being exploited or coerced. It is critical to examine that assumption. We hereby call for the swift initiation of evidence-based research on ways to offer benefits to organ donors in order to expand the availability of transplants."
Your organ's next life: It's not illegal to sell other biological products. We put dollar signs next to eggs and sperm — they may not sustain life, but they certainly enable it. That's part of the reason Frances Kissling, a scholar at the University of Pennsylvania's Center for Bio Ethics, said opposition to the compensation model is often rooted in emotional or aesthetic revulsion, rather than any sound ethical argument. Basically, pondering your organs' next life is creepy.
Kissling and other pro-exchange advocates aren't convinced by arguments pertaining to a black market, either. The fear that compensation is a gateway to organ thieves siphoning lungs in Times Square is a supposition without much factual basis, they say. Organ trafficking may be a problem in some developing nations, but that's not because their legal exchanges got out of hand.
What's more, the U.S. already has at least one policy that, in some way, constitutes a precedent. We compensate people for a good deed that comes with plenty of physical and mental health risks: joining the Army. And we don't insist that soldiers enlist purely for altruistic reasons. Military service has come with a free college education since the G.I. bill passed in 1944. Perhaps living donors, who would still need to meet high health standards to go under the knife, could also receive a stipend toward education, said Kissling. And the families of donors might get money to cover a funeral, medical bills, various loans or other expenses.
"Obviously, someone could say we should treat the human body with respect, dead or alive, and that we shouldn't be using cadavers for frivolous reasons," Kissling said. "And saving a life is the least frivolous reason one could imagine, right?"
Paying for tragedy: Brooks Edwards, director of the Mayo Clinic heart transplant center, said he'd be reluctant to incentivize donation. He's seen many devastated donor families find solace in the fact that their personal tragedy wasn't for naught, and he thinks that offering them money, or the equivalent, would cheapen such a satisfying act of altruism. More importantly, he doesn't believe that increasing the donor pool will actually solve the donation crisis. He thinks the answer lies instead in promising scientific advancements: breakthroughs in cell therapy and mechanical support devices far better than what we have now.
"Sometimes, it seems like nothing's happening, and then there's a quantum leap," Edwards said. "I think one of those quantum leaps is on the horizon, something we're going to see in the next 10 years. By the time I retire, my goal is to be able to offer strategies [for heart failure] that don't require losing a life to save other lives."
Present day: It's been one year and three months since Hamilton got a second heart transplant. While he hasn't run into any major complications, it hasn't been an entirely bump-free ride. Life doesn't automatically snap into place after spending the better part of a year living on mechanical heart pumps and patience.
Hamilton is reminded of his transplant-list days all the time, like when he catches a glimpse of his surgery scars running up and down his chest. And, as he interviews for jobs, he thinks about his last transplant debacle as a resume gap that requires an explanation.
Still, he gets to live. He knows rejection is always a possibility, but he's confident that if and when his heart fails, the next one can be grown from his own stem cell tissue. And according to Edwards, his optimism is perfectly reasonable.
Otherwise, Hamilton doesn't spend much time thinking about the heart ticking inside his chest. When everything's working — against all odds — what's the point?
Perhaps with systemic change, thousands of people still stuck on America's ever-growing transplant list would get the chance to stop thinking about their organs too.