Finding an organ donor is literally a life-or-death matter these days.
Just ask Wayne Winters of Utah, who donned a sandwich board and walked miles pleading for a donor (“Need kidney 4 wife”).
He found one.
After his novel campaign went viral, hundreds of other donors also volunteered.
Many other needy recipients aren’t so lucky.
According to the U.S. Department of Health and Human Services, more than 116,000 people were recently on the national transplant list, waiting for vital organs such as kidneys, livers, hearts, or lungs.
The number of people on the list has nearly tripled over the past few decades, but organ donors are only slowly signing on.
So recipients may have to wait two to six years — and sometimes as long as 10 -- before being matched with a donor.
Twenty people die each day waiting for a transplant.
“So, people are on their own when identifying living kidney donors,” Dr. Jayme Locke, a transplant surgeon at University of Alabama at Birmingham, told Healthline. “They’re trying to find creative ways to identify them.”
The upshot is that innovative methods are being used to speed up organ donations.
Besides old-school sandwich boards, people are increasingly turning to social media venues such as Facebook, Instagram, apps, or Twitter.
Turn to family and friends first
Take Jennifer and Cynthia Flood.
The sisters founded a nonprofit called Flood Sisters Kidney Foundation that helps find kidney donors.
They posted an ad on Craigslist in 2008, asking for a living kidney donor for their ailing father, and got hundreds of responses.
To spur donations now, patient profiles appear on Facebook and Twitter, along with photos and blood type.
The nonprofit even partnered with Dolly Parton after her entertainment attorney needed a kidney.
“We got 200 possible donors from that campaign,” Jennifer Flood, co-founder and president of the Flood Sisters Kidney Foundation, told Healthline. “It’s a good time around the holidays to share stories.”
On another campaign, Barbara Corcoran, the real estate titan of “Shark Tank” fame, joined with the Flood sisters for a campaign on Instagram to help her personal assistant, Gail Abrahamsen, find a kidney.
They received 100 responses and a donor. Abrahamsen will have her transplant in early January.
“You’re asking someone to give an important organ from their body to someone they don’t know,” Abrahamsen told Healthline.
Organizations, companies helping out
Typically, organ donors turn out to be family and friends, say experts.
But for those who fall in the cracks, there’s also the United Network for Organ Sharing (UNOS), which manages the country’s transplant system for the federal government.
The goal is creating an equitable system, Dr. David Klassen, chief medical officer at UNOS, told Healthline.
Each organ has its own distribution system, he says. But there are many more people needing organs than available donors.
“Having an appropriate available donor is the best route,” he told Healthline. “Getting on the list is the next option.”
That’s why other nonprofits like Organize and Waitlist Zero are also stepping in to help people find donors.
Technology giants are helping too.
Millions of people can register to be donors by using a sign-up button on Apple’s iPhone Health app.
For Apple Chief Executive Officer Tim Cook, this is a personal mission.
He saw Apple co-founder Steve Jobs spend excruciating time waiting for a liver transplant. He ended up registering in Tennessee because California’s list was too long.
Facebook also added a feature in 2012 that lets members link to registries in their states and share organ donor status with friends.
According to a study by Johns Hopkins researchers, this so-called Facebook effect dramatically boosted organ donations.
A Facebook app that helps wait-listed candidates post their need for live donors helps too.
“Social media is a very potent form of communication,” Dr. Andrew Cameron, an associate professor of surgery at the Johns Hopkins University School of Medicine in Maryland, told Healthline. “It’s possible to reach out with specific messages to those who are most appropriate.”
Facebook is special, though, he added, since people are emotionally connected.
So a high school friend you haven’t seen for many years may end up being a donor.
“Total strangers aren’t the place to start,” he said.
Whatever the venues, the key to success is a great personal story, add experts, as well as just voicing the need.
The U.S. Department of Health and Human Services reports that 95 percent of U.S. adults support organ donation, but only 54 percent are signed up to become a donor.
Voicing the need
Even with new media, finding donors is still challenging.
National campaigns to educate the public about the critical organ shortage have yet to gain traction, say experts.
And donors who want to give heart, lungs, and other essential organs after their death must register at the Department of Motor Vehicles.
“It’s inappropriate,” said Cameron. “A complete stranger is asking ‘Can we have your organ?’”
Also, personally asking for a donor is overwhelming, said Locke.
“When people become sick, they also become private,” she says. “But they must share personal details about themselves.”
Part of the difficulty is dispelling myths about donating a kidney, Abby Swanson Kazley, a division director of master of science in health informatics at the Medical University of South Carolina, told Healthline.
Donating a kidney doesn’t affect your health.
“You can donate a kidney and still lead a healthy life,” she said.
Josh Harrold, 39, donated a kidney to a friend’s wife after she posted a comment on Facebook about her bad health. She was going on the donor list.
“I reached out right away,” he told Healthline. “If she hadn’t been vulnerable, I never would have realized I could be a kidney donor.”
He also educated himself about the health risks of donating a kidney. He discovered that the procedure was minimally invasive and wouldn’t shorten his life span.
“There were no negatives,” he said. “It seemed selfish if I know I could give a kidney and wouldn’t.”
He surprised her with the donation by announcing it on the message board at a sporting event.