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Donate Life America and UPMC are collaborating on a first-of-its-kind online community aimed at increasing living donor transplant awareness. The initiative recently launched with the activation of the Donate Life America/UPMC Living Donor Transplant Facebook page, the first step in creating a social space for patients, donors and prospective donors to connect, get educated and share their stories.
“Donate Life America is proud to be a part of this effort to increase living donor transplant awareness,” said David Fleming, president and chief executive officer of Donate Life America, a nonprofit alliance of national organizations and state teams committed to increasing organ donation. “We applaud UPMC’s commitment to innovation and desire to educate the public about living donation and its lifesaving benefits.”
More than 120,000 men, women and children are in need of a lifesaving organ transplant. More than 28,000 people receive a transplant in the U.S. each year, including more than 6,000 from living organ donors. Although 90 percent of Americans say they support organ donation, only 52 percent are registered donors, and even fewer understand the benefits of kidney and liver transplants from living donors.
“The transplant field has come a long way over the last 20 years, but the organ shortage has gotten worse,” said Abhinav Humar, MD, UPMC’s chief of transplantation. “One of the main reasons living donor transplants haven’t taken off is because of a lack of information about the process, what it involves and who can be candidates. This initiative is a way to disseminate living donor transplant information to more people, which could help alleviate the organ shortage and save countless lives.”
More than 1 billion people are active on Facebook worldwide, and recent studies have shown that 28 percent of health-related conversations on Facebook support health-related causes, followed by 27 percent of people commenting about health experiences or updates.
“With more than 115,000 Americans waiting for a kidney or liver transplant, it is vital people know about living donation as an option,” Mr. Fleming added. “Living donation offers a key opportunity to save more lives, and Donate Life America is excited to be a part of this initiative to build a national living donation community through the power of social media.”
Donya McCoy knows all too well the power of social media when it comes to finding a donor.
At 3 years old, her daughter Kennedy was diagnosed with a rare metabolic disorder, and doctors believed a liver transplant could correct some of the factors contributing to the disease. Kennedy didn’t have a very good chance at securing a deceased donor liver, and living-donor liver transplant was her best option. Due to her rare condition, the donor had to be unrelated.
After researching how the living donor transplant process worked on several websites, Ms. McCoy posted what she called the “request of a lifetime” on her Facebook page in July 2014 looking for anyone with O positive blood willing to donate 25 percent of his or her liver to save her daughter’s life.
Firefighter Mike Thompson, a former classmate, messaged her back and wanted to help. A successful living donor transplant later took place at Children’s Hospital of Pittsburgh of UPMC.
Today, Mr. Thompson and Kennedy are doing well.
“I wasn’t just going to stand in the fruit section of the grocery store and ask for someone to save my daughter’s life, so I went online to find everything I could about the process,” Ms. McCoy said. “Facebook is my largest network of people unrelated to me and seemed like the natural place to find a donor. As humans we need to share our experiences in the hope of helping others, and this online community will help do that.”
In addition to featuring educational content about living donation, including videos from experts, articles and patient stories, the intent of the Facebook page is to allow patients and families a place to share their stories and connect with others whose lives have been affected by transplantation.
The goal of the partnership is to reduce the pediatric and adult liver and kidney waiting lists, eradicate pediatric waiting-list deaths, and improve access to transplants nationally.