Every year, about 35,000 people are added to a national waitlist in hopes of receiving a kidney. This list hovers around a total of 100,000 names. Several thousand die every year while waiting for the organ. Many others become too ill to successfully receive a transplant. The need is so severe that people are driven to painting their blood types on their cars, next to the words “I need a kidney.” If you type “need kidney” into the search bar on twitter, you will find users whose entire social media profiles are devoted to looking for a kidney, identifying themselves as “Need O+kidney” or “need_new_kidney_help_us.”
Last week, the New York Times published a story that was, in part, about a woman, Dawn Dorland, who decided to give one of her own kidneys to a total stranger on that waitlist. Her donation inspired the stranger’s wife, who had not been a blood match for her husband to also undergo surgery to remove one of her kidneys, which would then, too, go to a stranger. Dorland wrote about her experience for a small private group on Facebook, sharing medical updates. She also posted a short letter she’d sent to the recipient of the wife’s kidney: “Throughout my preparation for becoming a donor,” she wrote, “I focused a majority of my mental energy on imagining and celebrating you.”
That letter is at the center of the New York Times piece, “Who Is the Bad Art Friend?,” which is a story that is not exactly about kidney donation, but friendship and ethics in creative writing. A writing peer, Sonya Larson, whom Dorland had invited to the Facebook group, included some of Dorland’s letter in a piece of fiction, titled “The Kindest,” about a condescending and entitled kidney donor, which was, Larson admitted, inspired by Dorland. Leaving aside many, many specifics of this whole tangled saga—both Dorland and Larson filed lawsuits!—one important theme emerged in Larson’s writing and group texts: Dorland was being awfully self-righteous about her supposed altruistic gift. A similar question emerged on social media in response to the piece: Should kidney donors brag at all?
The answer is a resounding yes: If you donate an organ, it is actually very good to talk about it. What makes the kidney shortage uniquely tragic is that there is technically no shortage of actual kidneys. Most people have two kidneys but can be perfectly healthy–and live a long life–with only one. There are literally millions of spare kidneys in the United States. Given 35,000 people are added to the waitlist every year, only .014 percent of our country’s adult population, or one in about every 7,000 people, would have to donate a kidney each year to meet the demand. In this light, there is actually a massive kidney surplus.
Of course, the system to get healthy, spare kidneys into sick people is not entirely simple—after all, they belong to people. The United States has settled on a kidney donation system that combines deceased and living donation. The vast majority of kidneys, around 70 percent, come from deceased donors. However, the supply from deceased donors is not nearly enough to meet the demand. In 2019, 16,534 deceased kidneys were donated, barely a dent in the waitlist of 100,000 people. This is where living donors come in.
Most living donors are called “directed donors,” as they donate directly to a family member or friend in need. But not everyone has a family member who matches their blood type and is willing to undergo the procedure, which is very safe but can require time off from work and financial savings in the event of complications. Others, about 2 percent of all kidney donors per year, are called “nondirected donors.” They are strangers to the recipient who have simply decided to give up their organ to a person in need. Giving someone, whether a loved one or a stranger, a kidney really is an incredible act: Kidneys from living donors allow for reduced time on dialysis compared with those from deceased donors, which improves recipient outcomes. They also last almost twice as long. Getting someone to be a nondirected donor has even further benefits: They can inspire “donor chains”—a family member of someone who receives a stranger’s kidney in turn donates a kidney to a stranger—involving many otherwise incompatible donor-recipient pairs. These chains can produce dozens of donations.
So: an incredible solution to a dire crisis. But in reality, there just aren’t that many nondirected donors—in 2019, there were only 388. The question is: How do we as a society encourage more people to donate?
Kidney foundations, doctors, and medical ethicists have struggled with this question for years. Some ethicists have proposed giving donors Congressional Medals of Honor, rewarding donors with lifelong insurance coverage, or making government contributions to a retirement fund. Some advocate for donor compensation, such that the government would reimburse donors not only for lost work but also for their donated organ.
In this country, we have adopted none of these proposals. Although some ethicists argue that forms of compensation for donation would both solve the kidney crisis and ultimately benefit donors, others fear the potential for exploitation. Given this unresolved debate, the method we, as a society, have settled on is altruistic messaging. We simply try, as hard as we can, to inspire people to give a piece of themselves to save others. To encourage deceased donation, we place a heart—the symbol of love—next to “Organ Donor” on driver’s licenses. To encourage living donation, donors like Dorland might be asked to speak out about their experience. After giving her kidney, Dorland was invited to walk in the Rose Bowl parade, a fact she shared in the private Facebook group with the hashtag #domoreforeachother.
This became a point of mockery for Larson—the writer who authored a short story inspired by Dorland’s donation—and her friend group. “I just can’t help but think that she is feeding off the whole thing,” she wrote in a text, which was unearthed during the discovery phase of a lawsuit. Yes, it might seem a little cringey to post on social media about an altruistic gift. But posting about the gift is exactly what kidney advocates are hoping donors will do. The National Kidney Donation Organization states, on its webpage, “Be Someone’s Gift of Life.” Another—the National Kidney Foundation—advocates for the hashtag on twitter: #bigaskbiggift. This same organization shares videos of kidney donors with tweets proclaiming, “Honor a kidney donor or recipient who has inspired you” and “How one woman’s selfless kidney donation made her a hero.” Donors are also encouraged to sport bumper stickers signaling their act of selflessness: “Ask me about my kidney donation” and “Share Your Spare.” Organizations have initiated living donation storytelling projects, telling both donors and recipients: “By sharing their candid personal stories, they each help to raise awareness about the need for living donors to help solve the kidney donor shortage.”
I should note that nondirected kidney donors are often wary of claiming heroism. The nondirected donors I know rarely tell their stories. The reactions to doing so can be strange, resulting in excessive praise or, in many cases, being treated like weirdos. One nondirected donor, Katie Acosta, wrote in a piece about the experience that “the reactions generally fell into two camps: I was either completely crazy or a saint, both of which I knew to be untrue.” And some take the disclosure and advocacy as a reason to pull out their microscope—Dorland wasn’t the first person to be swept into a piece of art as a result of making the donation. Writes Acosta: “I also somehow ended up as one of the subjects of a documentary exploring altruism.”
The New York Times story raised all kinds of difficult questions far beyond kidney donation—about race, about plagiarism, about the nature of group texts—leaving things muddled, at the end, as to which protagonist was more “blameworthy.” However, one thing is incredibly clear: Kidney donors should tell their stories. They should encourage others to donate as well. They should reassure these same people that you can live a long and happy life with just one kidney. Maybe this will seem a little smug to the rest of us—but we should just deal with it. Because in being loud about their generosity, donors might just save a few more lives. If anything concrete comes out of the strange and complicated viral saga, I hope it’s that someone else is inspired to donate one of their kidneys, too.