Overcoming Barriers to Organ Donor Registration

The impact that a kidney transplant can have on a child’s life cannot be overstated. A transplant can allow a child who spent 3 days a week receiving hemodialysis treatments to return to school full time, participate in sports, and lead an essentially normal life. It also confers less tangible benefits, including improvements in growth and development and decreased mortality. As a Pediatric Nephrology fellow, I spend a lot of time taking care of patients on dialysis and working to help them receive transplants. The national shortage of organs means that approximately 80% of pediatric patients are on the UNOS wait list longer than 1 year before receiving a kidney transplant.

According to donatelife.net, which coordinates the National Donate Life Registry, 95% of Americans favor being an organ donor, but only 54% are actually registered. Registration is beneficial, as it indicates an individual’s wishes and removes some burden of making a decision about organ donation from the family. Numbers of those registered differ by state and by county within a state.

Registered organ donors

• United States: 54% (18 and older)
• Pennsylvania: 46% (18 and older)
• Philadelphia County: 31% (16 and older); 21.8% (16–17)
• Chester County: 57% (16 and older); 61.7% (16–17)

Source: DonateLife PA: Stats By County. Accessed March 1, 2017.

Myths and misconceptions about organ donation continue to create barriers to registration. A common concern is that in the event of serious illness or injury, there will be less effort to save a patient’s life if he or she has registered as an organ donor. In practice, the team providing care during an illness and the organ procurement team are different teams, to prevent any possibility of a conflict of interest. Another barrier is the notion that if one chooses to be a donor, then all organs will be procured for transplant regardless of patient preference. Importantly, individuals can designate specific organs to donate while listing organs/tissues that should be excluded from donation. Finally, there is a common belief that one can choose to be an organ donor only when registering for a driver’s license. In fact, one can visit donatelife.net/register and register to be an organ donor anytime.

Pediatricians are uniquely positioned to encourage adolescent patients and their families to have a discussion about the possibility of organ donation. A well-informed primary care provider can provide accurate education, as well as answer questions and dispel myths that may arise. Further, educational materials are available online and can be displayed in the office. By fostering a family discussion early on, adolescents and their parents may be more likely to understand the implications of organ donation and may make a more informed decision when asked about organ donation at the DMV.

You can visit the website for Gift of Life, the organ procurement organization for eastern Pennsylvania, southern New Jersey and Delaware at donors1.org for educational materials and to learn about local programs.

References and suggested readings

Health Resources and Services Administration. Scientific Registry of Transplant Recipients. 2012 Annual Data Report: Kidney. Accessed March 1, 2017.

Donate Life America. 2016 Annual Report. Accessed March 1, 2017