Maiya Cunningham died at age 14 while waiting for a heart transplant.
(Courtesy of Vivian Jackson)But Cunningham stressed that at no point did she believe race was a factor in Maiya's care or death.
According to data from UNOS, race is not medically relevant when matching organ donors with recipients.
"Obviously, we do not intend for any group to be disenfranchised by the system," Johnson said, adding that there may be hidden factors for which the researchers did not account.
Among the factors that UNOS considers when determining priority on the transplant waiting list are the body size of the organ recipient, the severity of the condition and how close the recipient lives to doctors and medical centers that can perform the procedure.
But low donation numbers, particularly from groups of color, can shrink the resources of the organ pool, which can affect patients of any race.
J. J. Nicastro was diagnosed with a viral inflammation of the heart after a series of what looked like seizures at age 12. His mother, Tammy Silveira of Gloucester, Mass., whose family identifies as white, later learned her son was having strokes.
During J.J.'s 2.5-week stay at Children's Hospital of Boston, his name was put on a heart transplant list. But each time his health declined -- if his lungs filled with fluid or he began bleeding into his brain -- his name was removed from the list.
"We made the miserable decision to stop everything at that point," Silveira said, after her son had been taken off the transplant list for the third time and his pediatrician said there was nothing they could do to stop the virus. "All he needs is a heart. As a parent, you just don't understand it at the time."
But procuring a healthy heart can be difficult compared to other organs. While the organ transplant waiting list is national, people waiting for hearts are limited to donors from their own region because a heart needs to be in a recipient's body no more than six hours after it is taken from a donor's body. By contrast, livers and kidneys can travel farther because they can last up to 18 and 24 hours outside the body, respectively.
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