New research showing that children of color are more likely to die waiting for a heart transplant than their white counterparts has the scientific community asking more questions than before about why this might be the case.
Using data from the United Network of Organ Sharing (UNOS) during an eight-year period, the study, conducted by researchers at Harvard Medical School in Boston, showed that wait-list mortality was 14 percent for white children, 19 percent for black children, 21 percent for Hispanic children and 27 percent for other groups awaiting a heart transplant.
"The bigger question is why this is happening," said Dr. Maryl Johnson, head of the UNOS Thoracic Committee and medical director of the heart failure and transplant unit at the University of Wisconsin in Madison. "They control for a lot of things."
After controlling for factors such as age, health status, medical insurance and household income, blacks and Hispanics had a 40 percent greater risk of dying on a heart transplant waiting list compared to white patients. The death risk for Asians and other groups increased 100 percent or more.
"Hearing those types of statistics, it's not shocking to me," said Sharnell Cunningham, a 35-year-old black woman from Duncanville, Texas. "When it comes to health care, minorities are always on the bottom of the list."
Cunningham's daughter Maiya died in August before she could receive a heart transplant after 14 years of battling a congenital heart disease.
Diagnosed with congenital heart disease at age 2, Maiya had no major health problems until September 2007, when a routine checkup showed that her kidneys and liver were showing signs of deterioration.
Cunningham said doctors told her Maiya was not considered a good candidate for a heart transplant. High levels of antibodies in her blood meant that her body would probably launch a strong immune response to foreign organs,they said.
In addition, toward the end of Maiya's life, her kidneys and liver had deteriorated to the point where she would have needed a triple-organ transplant, something that Cunningham said is not done.
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.