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Fernando Moreno has been on dialysis for almost two years and is facing an “unbearable” wait for a new kidney to save his life. Their limited world of social contacts means their hopes are pinned on growing national waiting lists for transplants.
That was until earlier this year, when philadelphia The hospital where she is treated has hooked her up with a promising pilot project that pairs her with “Angel Advocates” – Good Samaritan strangers scattered across the country who leverage their own social media contacts to share her story.
Until now, the great social experiment, as its founder named it, los angeles Filmmaker David Chrisman couldn’t find Vinland, new JerseyTruck driver a living kidney donor. But there are encouraging early signs that the angel advocate approach is working, and no doubt it has given Moreno new optimism.
“This process is great. I’m just hoping there’s someone out there who is willing to take a chance,” said Moreno, 50, whose own father died of kidney failure at age 65.
Moreno is part of a pilot program with 15 patients that began in May at three Pennsylvania hospitals. It’s testing whether motivated, volunteer strangers can help improve the chances of finding a life-saving partner for a new kidney – especially for people with limited social networks.
“We know how it’s always been done, and we’re trying to put them on steroids and really get them the help they need,” Chrisman said. “Most patients are so sick that they can’t do it themselves – many people don’t have the skills to do it themselves.”
looking for a blueprint for the future
The Gift of Life Donor Program, which serves as the organ procurement network for 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 the program through Temple University Hospital have found kidney donors, and one is preparing for surgery, according to Ryan Ihlenfelt, director of the hospital’s clinical transplant services. One in five patients at the University of Pittsburgh Medical Center Harrisburg Transplant has also taken place.
Richard Hayes Jr., chief executive of Gift of Life, said the approach Chrisman developed is something new, and it could help identify the types of messages that attract and motivate potential living kidney donors.
“This is the first case of its kind that I’m aware of,” Haasz 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 for the future, if you will.”
Gift of Life agreed to fund a broader trial and helped Chrisman identify five patients at each of Temple, UPMC-Harrisburg and Jefferson University Hospital in Philadelphia.
Hayes said the pilot program’s approach combines social media outreach with Chrisman’s storytelling talent and aggressive efforts to mobilize patients’ own connections.
“We know that patients who are waiting don’t always have the energy or resources to do so,” Hayes said.
Other ways are to set up “microsites” for patients where they can tell their stories and seek donor partners. But a pilot program currently underway in Pennsylvania aims to connect patients to a broader universe of potential donors and produce videos and other methods to spread their message.
‘Snowball’ possibility
Chrisman’s battle with an illness nearly two decades ago inspired him to tackle the daunting challenge of increasing living kidney donations. He was debilitated for more than a year, after which medication helped him recover, saying, “It gave me my life back. And I never forgot what it was like to be sick for a long time.”
After creating a podcast on kidney transplants, Chrisman recruited four patients through Facebook who were waiting for a kidney. He was able to help two of them. Second attempt, a pilot program with three patients North Carolina That ended last year, helping to connect all three with living donors.
Becca Brown, director of transplant services at UPMC-Harrisburg, believes this could be a game changer.
“It’s likely to really snowball,” Brown said. “I’m curious to see what happens and whether we can extend it to other patients.”
About 90,000 people are on the list for kidney transplants in the United States, and most of the approximately 28,000 kidneys transplanted last year came from deceased donors. Living kidney donations are hard to come by – about 6,400 kidneys were transplanted last year. Thousands of people die each year waiting for organ transplants in the United States.
Living kidney donation may be a better match, reducing the risk of organ rejection. They allow surgery to be planned at a time that is optimal for the donor, recipient, and transplant team. And, the foundation says, kidneys from a living donor last longer, on average, than kidneys from a deceased donor.
The National Kidney Foundation states that living donors must be at least 18 years of age, 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 specify who will get their kidney. Indirect donation is 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 Angel Advocate program after becoming a dual living donor – a kidney and a part of his liver.
He sees the program as “a small way to make a small difference for everyone.”
Another angel advocate, Holly Armstrong, was also a living donor. He hopes his 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, where they stop scrolling and say, ‘This guy needs a kidney.'”
A study released last year found that people who voluntarily donate a kidney had a lower risk of death from the operation than doctors expected. Tracking living kidney donations for 30 years, researchers found that less than 1 in every 10,000 donors died within three months of surgery. New and safe surgical techniques were credited with reducing the risk to 3 deaths per 10,000 living donors.
Temple serves a large group of poor patients who may have difficulty understanding health issues and who suffer from uncontrolled high blood pressure and diabetes, said Ihlenfelt, who works there.
“What David is trying to do is create a network of support around these patients who are sharing their story,” Ihlenfelt said.
rally for ahmed
At a kickoff event in a Harrisburg meeting room for kidney patient Ahmed Collins, a few dozen friends and family listened attentively as Chrisman discussed the game plan, answering questions and describing the transplant process.
Collins, a 50-year-old city government employee and former Penn State linebacker, requires dialysis 10 hours a night because his kidneys were damaged by a medical procedure late last year.
His focus was on strangers who might decide to join in.
“It could be said that he could be a superhero,” Collins said. “They may have an opportunity to save someone’s life, and very few times in life do you get that opportunity.”