HARRISBURG, PA — Fernando Moreno has been on dialysis for about two years, enduring the “unbearable” wait for a new kidney that will save his life. His limited world of social contacts means his hopes lie in the national transplant waiting list growing.
That is, until earlier this year, when the Philadelphia hospital where he is being treated connected him with a promising pilot project that paired him with “advocate angels”—good Samaritan strangers scattered across the country who use their own social media contacts to share his story.
Still The Great Social Experimentas it was called by its founder, Los Angeles-based filmmaker David Crissman, was not found in Vineland, New Jersey, truck driver living kidney donor. But there are encouraging early signs that the angel advocate approach is working, and there is no doubt that it has given Moreno renewed optimism.
“It's a wonderful process,” said Moreno, 50, whose own father died of kidney failure at 65. “I just hope there is someone willing to take the risk.”
Moreno is participating in a 15-patient pilot program that began in May at three Pennsylvania hospitals. It's a test of whether motivated volunteer strangers 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 it's always been done, and we're trying to apply that to steroids and really give them the help they need,” Crissman said. “Most patients are too sick to do it themselves—many don’t have the skills to do it themselves.”
The Gift of Life Donor Program, which serves as an organ procurement network in eastern Pennsylvania, southern New Jersey and Delaware, is supporting the pilot program with a grant of more than $100,000 from its foundation.
So far, two of the five patients in Temple University Hospital's program have found kidney donors and one is preparing for surgery, according to Ryan Ihlenfeldt, the hospital's director of clinical transplant services. One in five patients at the University of Pittsburgh Medical Center in Harrisburg also received a transplant.
The approach Crissman developed is new and could help identify the types of messages that attract and motivate potential living kidney donors, according to Richard Hus Jr., executive director of Gift of Life.
“This is the first such event that I know of,” Has said. “That's why I think the foundation was so interested in this – in studying it and hopefully publishing it – so that we could create this plan, if you will, for the future.”
Gift of Life agreed to fund the larger study and helped Crissman identify five patients each at Temple, UPMC-Harrisburg and Jefferson University Hospital in Philadelphia.
Hus said the pilot program's approach combines social media outreach with Crissman's talent for storytelling and aggressive efforts to mobilize patients' own connections.
“We know that patients who wait don't always have the energy or resources to do it themselves,” Hus said.
Patients had other ways of adjusting.” microsites ” where they can tell their stories and find a matching donor. But a pilot program currently underway in Pennsylvania aims to connect patients with a wide range of potential donors, as well as create videos and other ways to get their word out.
Crissman's illness nearly two decades ago inspired him to tackle the daunting task of increasing the number of living kidney donors. He was weakened for more than a year before medication helped him recover, explaining: “It gave me my life back. And I never forgot what it was like to be chronically ill.”
After creating a podcast about kidney transplants, Crissman recruited four patients awaiting kidney transplants through Facebook. He was able to help two of them. The second effort, a pilot program with three patients in North Carolina that ended last year, helped match all three with living donors.
Becca Brown, director of transplant services at UPMC-Harrisburg, believes this could be a game changer.
“There's potential for this to really snowball,” Brown said. “I can’t wait to see what happens and if we can spread this to other patients.”
About 90,000 people in the United States are on the kidney transplant list, and most of the roughly 28,000 kidneys transplanted last year came from deceased donors. Donor kidneys are difficult to find: about 6,400 were transplanted last year. Thousands die every year waiting for organ transplantation in the USA.
Living kidney donation may be a more suitable option because it reduces the risk of organ rejection. They allow the operation to be planned at a time that is optimal for the donor, recipient and transplant team. And, the foundation says, kidneys from living donors last longer on average than kidneys from deceased donors.
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 smoke.
Many living donors make “directed donations” to designate who will receive their kidneys. Undirected donations are made anonymously to the patient.
Francis Beaumier, a 38-year-old information technology specialist from Green Bay, Wisconsin, came into contact with the Angel Protection Program after being double living donor – kidney and part of the liver.
He sees the program as “a great little way for everyone to make a small contribution.”
Another protective angel, Holly Armstrong, was also a living donor. She hopes her efforts will plant a seed.
“Some people may just keep scrolling,” said Armstrong, who lives in Lake Wylie, South Carolina. “But there might be someone like me who will stop scrolling and say, 'This boy needs a kidney.'
A study published last year found that people who voluntarily donate a kidney have a lower risk of dying from the surgery than doctors previously thought. Tracking a 30-year history of living kidney donations, researchers found that fewer than 1 in every 10,000 donors died within three months of surgery. New and safer surgical techniques were noted to reduce the risk of 3 deaths per 10,000 living donors.
Temple serves a large group of poor patients who may have difficulty understanding health problems and suffer from uncontrolled hypertension and diabetes, said Ihlenfeldt, who works there.
“What David is trying to do is create a support network around these patients who will share this story with them,” Ihlenfeldt said.
At the first event in a Harrisburg conference room for kidney patient Ahmad Collins, a couple dozen friends and family listened in rapt attention as Crissman discussed the game plan, answered questions and described the transplant process.
Collins, a 50-year-old city government employee and former Penn State linebacker, required dialysis 10 hours a day after a medical procedure damaged his kidneys late last year.
His thoughts were about strangers who might decide to intervene.
“They can be superheroes, so to speak,” Collins said. “They may have the opportunity to save someone's life, and it's not very often in life that you get that opportunity.”
