Deadly Wait for Nonwhite Kids Who Need Hearts

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."

A picture of several African-American children.Play

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.

Have A Heart

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.

"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."

Hearts in Demand

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.

And the criteria for donating organs are stringent. According to Pam Silvestri, spokeswoman for the Southwest Transplant Alliance in Dallas, only people who die in a hospital and on a ventilator are eligible to donate their organs. Of those roughly 20,000 people, about 5,000 are ruled out because of organ damage or diseases such as HIV. But not all eligible people choose to donate.

"Culture may also be very important," said Dr. Ileana L. Peña, an American Heart Association spokeswoman and a cardiology professor at Case Western Reserve University in Cleveland. "I'm Hispanic, and Hispanics may have a very different view of cardiac transplant and devices than their Caucasian counterparts."

Cunningham echoed this idea.

"It's kind of taboo, even in the African-American community," she said.

Cunningham, who has been raising awareness about organ donation since her daughter's death, said she found much misinformation about the subject within her community. People think they cannot donate because they are sick or diabetic or have high blood pressure. Many people believe registering to donate organs puts them on a targeted list in a vague conspiracy theory.

"It's just a no-win situation on both ends," she said.

Cunningham is in the process of creating a comprehensive site with resources and information on organ transplants, in hopes that it will help people to consider registering to be donors.

Although medical director Johnson said none of this would be an issue if enough people donated organs, she said the research might be a good starting point to look for holes in the transplant system and overall trends.

"The next step will be to look at what are the things that predict mortality overall and if there is a difference in distribution among ethnic groups. ... We can then work on things to make access to organs more equal," Johnson said. "Certainly, our goal is to never have a death on the waiting list."

ABC's Dan Childs contributed to this report.