o Harris was diagnosed with chronic kidney disease in 2015. In the five years since, he has gone to countless doctor appointments, spent weeks in bed with symptoms of the illness such as severe fatigue and body aches, and even battled and beat lung cancer. But the most difficult part of the journey by far, he says, was pushing the publish button on his first Instagram post searching for a life-saving kidney donation. “It’s very out of my nature to have to ask people for anything, and for this, you have to essentially ask, ‘Can you donate an organ so I can continue living?’” he said. “It’s unimaginably difficult.” Harris, who is 55 and lives in Provincetown, Massachusetts, is one of 37 million Americans with kidney disease and one of more than 100,000 seeking a donor. He also hopes to be one of the lucky few whose search on social media results in a life-saving match. The US is facing what has essentially become a permanent shortage in organ donations. Despite a 38% increase in donations in the last five years, the need for donors is still immense, according to the United Network for Organ Sharing. Every year in the US, 22,000 kidney transplants are performed, but 43,000 people die waiting for a kidney donation. Would-be recipients say finding a willing donor is a gut-wrenching process. Donors must also be in good general health and be compatible with the recipient’s blood and tissue types. This is more likely in relatives: siblings have a 25% chance of being an “exact match” for a living donor and a 50% chance of being a “half-match”. Some people have more difficulty finding a match than others, particularly people of color, and many can die or spend years undergoing time-consuming and painful dialysis treatments as they wait for a kidney. Harris’s husband of 27 years cannot donate his kidney as he recently had his own battle with cancer and his siblings are ineligible to donate as well. So in early 2020, Harris launched a social media campaign to find a donor to save his life. Since then, he has shared more than 100 posts on Instagram where he has 105 followers, often using related hashtags including #chronickidneydisease and #kidneydonorneeded. Social media did not come naturally to Harris, but he felt using it would give him the best chance of survival. “I just threw myself headfirst into it,” Harris said. “Not only am I looking for a donor, I wanted to put a face to a disease that is largely invisible.” He’s not the only one. Social media platforms show the tag #kidneywarrior has been shared thousands of times on Facebook, 121 posts in the past year used the hashtag #shareyourspare encouraging donations, 327 used hashtag #kidneydonor, some raising awareness and some seeking a donor. One 2013 study from Johns Hopkins University showed that people who use Facebook to find a willing donor have more success, with 32% reporting living donors being tested on their behalf after seeing their Facebook posts. Of 91 Facebook pages surveyed in the study, 13 reported that the campaign resulted in a kidney transplant. Harris got the idea for his campaign after attending a panel at Medstar Georgetown Transplant institute in Fairfax, Virginia, where more than 100 kidney transplant surgeries are done each year. Because of the limited availability of kidneys, hospitals and transplant centers are increasingly encouraging those in need to utilize social media for their search, even sponsoring events to teach them how to do so. In a recent kidney donor social media workshop, attendees were given tips including not to put blood or needles in photos for better engagement and to schedule multiple posts a week to keep followers engaged. Malikia S White, one of the people at the panel Harris attended, started a page #ThatGirlNeedsAKidney to share her story in 2017. She is still waiting for a transplant and often tells her followers, “I appreciate your likes but your shares will help save my life.” Kenneth Hunter, a diversity officer for a fire department in Maryland, said he was prompted to start his online search for a kidney donor after speaking to a social worker at his dialysis center who suggested he set up social media pages. He said before that he would have never considered looking online for help. “I was facing my own mortality, so I thought – what do I have to lose?” said Hunter, who also went through Medstar Georgetown for his transplant. “It was actually easier to ask online than in person, because that way you don’t have to look someone in the eye to ask them to save your life, and risk them telling you no.” Hunter was not a Facebook user, so decided to send a group email instead. He drafted a plea for a kidney and sent it to all 2,337 people he had saved as contacts in his inbox. He found three acquaintances willing to donate to him through the chain email. Two were denied for health reasons, but the third – a former co-worker – was able to donate through a donor exchange. Years later, Hunter is living with his new kidney and no longer has to go to dialysis treatments. Michelle Offik is a digital and strategic communications expert and kidney transplant recipient herself whom Harris has hired to help run his campaign to find a kidney. She owns her own business in Washington DC, which serves clients in healthcare and other industries, and also runs an Instagram channel dedicated to kidney disease and organ transplant (@thekidneycorner). She coaches her clients on how to make hashtags for their search (for Harris, the official hashtag is #KidneyforBo), how often to post, and what kind of content to include. Offik said starting a social media campaign helps empower people seeking transplants who otherwise can do little else but wait. “It’s a kind of a practical solution to a very intractable problem that policymakers around the world are trying to solve,” she said. But she added that recipient age as well as access to free time, financial resources, and internet all affect the ability to launch and manage a successful donation campaign. “It’s so much work to run a campaign essentially trying to save a life,” she said. “People who are not digital natives struggle.” Such access issues have broader ethical implications, said Brendan Parent, director of transplant ethics and policy research at NYU Grossman School of Medicine. People have been using social media to search for kidney donors for at least the past decade, he said, but the trend has significantly increased in the last five years. “The problem is, people who have the capacity to build an attractive and successful social media campaign tend to be from more advantaged economic classes,” he said. “This creates a further entrenchment of the disparities in access to necessary healthcare among different communities.” Prices for such services range from a one-time fee of $65 charged by a kidney donation advocacy site to set up a campaign page for a person in need of donation, to paid donation matching sites that cost as much as $595 for a lifetime membership. “We can’t blame people for trying, but at the same time, we need to find ways to empower people who don’t have either the means or the resources to make their particular story tug on the heartstrings of the general population via social media,” Parent added. One solution, he said, could be to require transplant centers to offer directors to create and coordinate these campaigns on behalf of people. Most transplant centers employ social workers to facilitate the donations, and some suggest offering social media experts in parallel roles. Ultimately, though, he and others in the space advocate to address the kidney shortage at its root. “There is a major need for reform so people aren’t obligated to go out and look for their own kidney,” Parent said. One such reform could be to require people to explicitly state if they do not want to be an organ donor, rather than requiring them to opt in to organ donation. Other studies suggest the best way to bridge the gap between the number of kidneys available and the number needed is to encourage more people to become living donors. Harris has had hundreds of people reach out to show support for his campaign and a few offer to donate, none so far have been a match. Still he considers his social media efforts a success in other ways. “I’m 55 years old, when I was in school I was still using a typewriter – now I can be in a little town on Cape Cod sharing my story with complete strangers around the world,” Harris said. “I was so afraid to tell my story, worried that nobody would show up for me. The outpouring of love has just been so wonderful.”