Using Social Media for Organ Transplantation

Reports indicate that the number of organ donors in the U.S. has decreased in recent years, while the number of patients in need of an organ transplant continues to grow. In 2006, there were 8,019 cadaveric organ donors and 6,732 living donors. Both figures have since decreased, and in 2008 there were only 7,990 cadaveric donors and 6,218 living donors. According to the National Kidney Foundation, 104,748 individuals in the United States are currently awaiting an organ transplant of some type, and more than 4,000 new patients are added to this figure each month. Organs from donors are matched to waiting recipients by a national computer registry called the National Organ Procurement and Transplantation Network (OPTN). In addition, close relatives and family members often undergo testing including tissue matching and blood typing to determine if they are a viable candidate for donation. Many organs, including kidneys, can be transplanted from either living or recently deceased donors, provided they have good kidney function, and low risk for certain disorders including high blood pressure and diabetes.

Transplants using kidneys from both living and cadaver donors are frequently successful, with about 94.9 percent and 97.96 percent of cadaver and living (respectively) donor kidneys still functioning after one year. In spite of the success rate, the wait to receive a transplant, which can often be several years and often requires dialysis and other physically taxing treatments, is too long for some individuals, and a number have chosen to utilize online social media to seek out possible donors. The Baltimore Sun reports that 80,000 people in the United States are currently awaiting kidney transplants, but just over 16,000 were completed last year. For individuals seeking to increase their chances of finding a donor, Annette Whinery, the coordinator of University Medical Center’s living donor program, says that it is becoming common for patients to seek out living donors on their own, often through church, work, family, and friends. Dr. Ngoc L. Thai, director of Allegheny General Hospital’s Center for Abdominal Transplantation, recently completed a transplant surgery in which the donor and recipient connected via Facebook. “It’s the way of the future,” according to Dr. Thai, who says that he expects more patients to turn to social networking websites for help finding donor matches. In addition to Facebook, some patients and their family members have turned to Craigslist and other websites to find possible donors.

Some individuals awaiting transplant and those who have recently received a transplant choose to use social networking websites to tell their story, rather than to ask others to consider donating an organ. Through blogs, Facebook, and Twitter, individuals in need of kidneys and other organs are able to keep others informed. Recent research has shown that people fighting chronic illnesses and those with serious health problems, such as those that might require an organ transplant, are using social media to find information and connect with others with similar ailments. Social networks like the Transplant Trust and Patients Like Me allow patients awaiting transplants, their families, physicians, donors, and others to connect with one another. In a recent study by Teri Browne, PhD, from the University of South Carolina in Columbia, this type of connection was shown to help patients navigate and understand the process of getting a transplant more easily.

According to Dave Bosch, spokesman for the Gift of Hope, an organ and tissue donor network, “Social media has become the way people communicate, very personally, about what’s going on in their life.” Dr. Kenneth Prager, director of clinical ethics and chairman of the Medical Ethics Committee at New York Presbyterian Hospital, notes that Internet appeals for organ donations raise a number of questions of fairness. While Dr. Prager states that “Solicitations undermine the concept of a level playing field,” which is the primary objective of the OPTN, “there is nothing illegal in advertising or using the Web for personal or health reasons. Altruistic organ donors have the legal right to designate recipients.” It is important to note, however, that the sale of kidneys and other organs is illegal, and all donations must be made without compensation.

Though the use social media to address matters related to an individual’s health may seem somewhat unusual, it is a trend that seems to be gaining in popularity. Some experts even argue that the solicitation for kidney and other organ donation on websites like matchingdonors.com, Craigslist, and Facebook may help to encourage individuals to consider donation and benefit the population of individuals in need of organs as a whole.

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3 Responses to Using Social Media for Organ Transplantation

  1. […] This post was Twitted by RenalStuff […]

  2. For a surgeon or physician to encourage a would-be recipient to solicit for a living donor is unethical. In fact, surgeons and UNOS/OPTN have openly said they won’t inform would-be recipients of the risks of living donation because it would be a ‘burden’. Yet apparently it’s permissible for those same recipients to ask a stranger to put their lives at risk for them.

    Recipients are asking strangers (friends and family) to donate an organ out of a sense of entitlement. Transplants are not cures. If one fails, a recipient obtains a new organ; a living donor does not. S/he must live with the consequences of being one-kidneyed forever.

    Between 2000-2009, 4.4 living donors died per year in the US within 12 months donating (OPTN data). Others suffer permanent nerve damage, adrenal dysfunction, lymph leakage, organ laceration, hernias, testicular swelling and pancreatitis (etc).

    Some living donors experience depression, anxiety, anger and PTSD symptoms. In fact in 2008, 3 living donors were hospitalized within 6 months of surgery for depression. Yet not a single transplant center offers aftercare or support services.

    It’s time to stop looking at living donors as collateral damage or simply organ incubators. We are human beings and we deserve the same consideration and respect as recipients. It’s reprehensible how individuals in positions of authority like Dr. Thai and Dave Bosch continue to encourage such manipulation.

    BTW, 1/3 of names on the waiting list are ‘inactive’, meaning they couldn’t accept an organ if one became available. According to an analysis by Delmonico, 52% of deaths on the waitlist are inactive. Eliminating ‘inactives’ from the list would present a much more true picture of the organ need in this country. Why has UNOS/OPTN refused to do so?

    • Thank you very much for your comment. Please note that this blog post was intended only to provide information about this important topic, not to indicate approval or disapproval of individuals in need of organ transplants using online social media to locate possible donors.

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