A new pilot program in Pennsylvania is exploring innovative ways to connect kidney transplant patients with living donors through social media. The initiative, dubbed the Great Social Experiment, pairs patients like Fernando Moreno with “angel advocates”—volunteers who use their social networks to amplify the patients’ stories and increase their chances of finding a donor.
Moreno, who has been on dialysis for approximately two years, described his wait for a kidney as “unbearable.” His limited social network had left him reliant on the national transplant waiting list until he was introduced to this program earlier this year. Although Moreno has yet to find a living kidney donor, he remains hopeful, stating, “This process is great. I’m just hoping there will be somebody out there that’s willing to take a chance.”
The pilot program, which began in May 2023, involves 15 patients across three hospitals: Temple University Hospital, UPMC-Harrisburg, and Jefferson University Hospital. The initiative aims to determine if motivated volunteers can enhance the likelihood of finding a suitable kidney match, particularly for individuals with limited connections.
David Krissman, a Los Angeles filmmaker and the program’s founder, emphasized the need for a more proactive approach. “Most patients are too sick to do this on their own—many don’t have the skills to do it on their own,” he remarked. The program is financially supported by the Gift of Life Donor Program, which has contributed over $100,000 to fund this groundbreaking initiative.
So far, the results are promising. According to Ryan Ihlenfeldt, director of clinical transplant services at Temple University Hospital, two of the five patients from their facility have secured kidney donors, with one preparing for surgery. Additionally, one patient at UPMC-Harrisburg has also undergone a successful transplant.
The Gift of Life Donor Program’s CEO Richard Hasz Jr. noted that this model represents a novel approach to increasing living kidney donations. “This is the first of its kind that I’m aware of,” he said, expressing hope that the program will yield insights into effective messaging that appeals to potential donors.
The pilot program utilizes social media outreach combined with compelling storytelling to connect patients with a broader audience of potential donors. While patients have previously set up “microsites” to share their stories, this initiative aims to expand the reach of their messages through videos and other creative methods.
Krissman’s personal experience with chronic illness inspired him to address the challenges of increasing living kidney donations. After a serious health scare nearly two decades ago, he recognized the importance of community support in recovery. Following the success of earlier initiatives, including a previous pilot program in North Carolina, Krissman has continued to refine his approach.
Healthcare professionals involved in the pilot program see significant potential. Becca Brown, director of transplant services at UPMC-Harrisburg, believes the program could have a lasting impact. “There’s potential for this to really snowball,” she said, eager to see how the initiative unfolds.
Currently, around 90,000 individuals in the United States are on the waiting list for kidney transplants. Last year, roughly 28,000 transplants were performed, with only 6,400 coming from living donors. Thousands of people die each year while waiting for an organ transplant, which underscores the urgent need for innovative approaches to increase living donations.
Living kidney donations are often preferred as they provide better matches, reducing the risk of organ rejection and allowing for more controlled timing of surgeries. According to the National Kidney Foundation, living donor kidneys tend to last longer than those from deceased donors.
Screening for potential living donors involves assessing their health status, as factors like uncontrolled hypertension, diabetes, or smoking can disqualify individuals. Some donors make directed donations to specific patients, while others opt for nondirected donations, remaining anonymous.
The angel advocate program has attracted individuals like Francis Beaumier, a double living donor from Green Bay, Wisconsin, who sees the initiative as a meaningful way to contribute. Similarly, Holly Armstrong, another living donor, hopes her involvement will inspire others to take action.
At a recent kickoff event in Harrisburg for patient Ahmad Collins, dozens gathered to learn more about the program. Collins, a 50-year-old city government employee and former Penn State linebacker, has been reliant on dialysis for ten hours each night since last year. He expressed gratitude for the potential of the angel advocate program, stating, “They can be a superhero, so to speak. They can have the opportunity to save somebody’s life, and not too many times in life do you have that opportunity.”
As this pilot program progresses, it holds the promise of transforming the landscape of kidney transplantation by mobilizing communities and increasing awareness about living kidney donation. The hope is that these efforts will not only help individual patients like Moreno and Collins but also pave the way for a future where living donations become a more common solution for those in need.
