HARRISBURG, Pa. (AP) — Fernando Moreno has been on dialysis for about two years, enduring an “unbearable” wait for a new kidney to save his life. His limited world of social contacts meant his hopes centered on growing the national waiting list for a transplant.
That was until earlier this year, when the Philadelphia hospital where he receives treatment connected him with a promising pilot project that paired him with “angel advocates” — Good Samaritan strangers scattered around the country who use their own social media contacts to share their story.
So far, the Great Social Experiment, as it has been called by its founder, Los Angeles filmmaker David Krissman, has not found the truck driver from Vineland, New Jersey, a living kidney donor. But there are encouraging early signs that the angel lawyers’ approach is working, and there’s no doubt it has given Moreno new optimism.
“This process is great,” said Moreno, 50, whose father died of kidney failure at 65. “I just hope there will be someone who is willing to take a chance.”
Moreno is part of a 15-patient pilot program that began in May at three Pennsylvania hospitals. It tests whether motivated strangers and volunteers can help improve the chances of finding a life-saving match for a new kidney – especially for people with limited social networks.
“We know how this has always been done, and we’re trying to put that on steroids and really give them the help they need,” Krissman said. “Most patients are too sick to do it themselves – many don’t have the skills to do it themselves.”
Looking for a plan for the future
The Gift of Life Donor Program, which serves as the organ procurement network for eastern Pennsylvania, southern New Jersey and Delaware, has supported the pilot program with a grant of more than $100,000 since its founding.
So far, two of the five patients in the program through Temple University Hospital have found kidney donors, and one is preparing for surgery, according to Ryan Ihlenfeldt, the hospital’s director of clinical transplant services. One of the five patients at the University of Pittsburgh Medical Center in Harrisburg also underwent a transplant.
The approach developed by Krissman is something new, said Richard Hasz Jr., executive director of Gift of Life, and may help identify the types of messages that attract and motivate potential living kidney donors.
“This is the first of its kind that I know of,” Hasz said. “That’s why, I think, the foundation was so interested in doing it — studying it and hopefully publishing it — so that we can create that blueprint, if you will, for the future.”
Gift of Life agreed to fund a larger trial and helped Krissman identify five patients each at Temple, UPMC-Harrisburg and Jefferson University Hospital in Philadelphia.
Hasz said the pilot program’s approach combines social media outreach with Krissman’s storytelling talents and aggressive efforts to mobilize patients’ own connections.
“We know that patients who are waiting don’t always have the energy or the resources to do it themselves,” Hasz said.
There have been other ways for patients to create “microsites” where they can tell their stories and search for a donor match. But the pilot program underway in Pennsylvania aims to connect patients with a wide universe of potential donors and produce videos and other ways to spread their message.
Snowball potential
Krissman’s battle with an illness some two decades ago inspired him to take on the difficult challenge of increasing living kidney donations. He was debilitated for more than a year before medication helped him recover, explaining: “It gave me my life back. And I’ve never forgotten what it’s like to be chronically ill.”
After producing a kidney transplant podcast, Krissman recruited four patients waiting for kidneys through Facebook. He was able to help two of them. A second effort, a three-patient pilot program in North Carolina that ended last year, helped all three with living donors.
Becca Brown, director of transplant services at UPMC-Harrisburg, thinks it could be a game changer.
“There is the potential for this to snowball,” Brown said. “I’m looking forward to seeing what happens and if we can roll it out to other patients.”
About 90,000 people in the United States are on the list for a kidney transplant, and most of the roughly 28,000 kidneys that were transplanted last year came from deceased donors. Living kidney donations are hard to come by – around 6,400 were transplanted last year. Thousands of people die each year waiting for an organ transplant in the United States.
Living kidney donations may be a better match, reducing the risk of organ rejection. These allow surgery to be planned for an optimal time for the donor, recipient and transplant team. And, the foundation says, kidneys from living donors, on average, last longer than kidneys from deceased donors.
The National Kidney Foundation says living donors must be at least 18 years old, although some transplant centers set the minimum age at 21. Potential donors are screened for health problems and may be excluded if they have uncontrolled high blood pressure, diabetes or cancer, or if they are smokers.
Many living donors make “directed donations” to specify who will receive their kidney. Undirected donations are made anonymously to a patient.
A way to make a difference
Francis Beaumier, a 38-year-old information technology worker from Green Bay, Wisconsin, came into contact with the Guardian Angels program after being a double living donor – a kidney and part of his liver.
He sees the program as “a great little way for everyone to make a little difference.”
Another Angel Advocate, Holly Armstrong, was also a living donor. She hopes her efforts will plant a seed.
“Some people might just keep scrolling,” said Armstrong, who lives in Lake Wiley, South Carolina. “But it could be someone like me, where he stops scrolling and says, ‘This boy needs a kidney.’
A study published last year found that people who volunteer to donate a kidney have a lower risk of dying from the operation than doctors previously thought. Following 30 years of living kidney donations, researchers found that fewer than 1 in 10,000 donors died within three months of the operation. Newer and safer surgical techniques have been credited with reducing the risk from 3 deaths per 10,000 living donors.
Temple serves a large cohort of poorer patients who may have difficulty understanding health problems and who suffer from uncontrolled high blood pressure and diabetes, said Ihlenfeldt, who works there.
“What David is trying to do is put together a support network around these patients who are sharing the story for them,” Ihlenfeldt said.
Rally for Ahmad
At a launch event in a Harrisburg boardroom for kidney patient Ahmad Collins, several dozen friends and family listened in rapt attention as Krissman went over the game plan, answering questions and describing the transplant process.
Collins, a 50-year-old city government worker and former Penn State linebacker, has required 10 hours a night of dialysis since a medical procedure left him with damaged kidneys late last year.
His mind was on the outsiders who might decide to intervene.
“I can be a superhero, so to speak,” Collins said. “They can have the opportunity to save someone’s life, and you don’t get that opportunity very often in life.”