Dr. Velma Scantlebury has completed more than 1,000 kidney transplants—and counting.
But since 1989, when she became the first African-American female surgeon to perform organ transplants in the United States, she’s noticed a disproportionate number of her patients were Black.
“Unfortunately, African-Americans have higher rates of the leading causes of kidney disease, hypertension and diabetes,” said Scantlebury, associate director of the Kidney Transplant Program at Christiana Care in Newark, Del. “Because of that, you have higher percentages of patients who end up on dialysis and needing a transplant.”
The dilemma Scantlebury has observed is not unique.
African-Americans constitute more than 32 percent of all patients in the U.S. receiving dialysis for kidney failure, according to the National Kidney Foundation, while they represent only 13 percent of the population.
That disparity is complicated by another startling fact: African-Americans are requiring organ transplants at a rate that is disproportionate to the number of registered African-American organ donors.
According to the Center for Organ Recovery & Education (CORE), 55 percent of people waiting on the national organ transplant list are multicultural patients, yet minorities comprise only a quarter of registered organ donors today.
“One of our essential roles at CORE is to help the people we serve throughout western Pennsylvania and West Virginia make informed decisions about organ, tissue and cornea donation,” said Susan Stuart, president and CEO of CORE. “Educating communities about the need for donors and clearing up misconceptions are essential to our daily activity.”
While the number of Black donors has steadily increased over the last 20 years—largely due in part to community education and empowerment initiatives—the number is still disproportionate to the number of Black individuals who require transplantation.
Scantlebury and colleagues throughout the organ donation community agree: low representation among African-Americans is largely due to a few pervasive myths and misconceptions about organ donation.
“The fear of organ donation is linked to the lack of correct information regarding this topic,” Scantlebury said. “There are a lot of misconceptions perpetuated throughout multicultural communities foster objections to donation. I believe one of the biggest obstacles we have is the spreading of inaccurate facts. With more education, better understanding will be the result. These are communities that are in need of transplants, and we must continue to communicate that the more donors there are, the more patients can receive a gift of life.”
Dr. Clive Callender, a professor of surgery at Howard University with more than 40 years in the field of transplant surgery, said his early research in 1982 uncovered five reasons why African-Americans are reluctant to donate organs.
The research pointed to: lack of information on renal disease and transplantation, religious myths, distrust of health providers, fear that physicians would be less likely to save their lives in the case of an emergency, and racism—that their organs would only go to White people.
“The myths that [our participants] believed in simply weren’t true, but we needed to find ways to dispel those myths,” Callender said. “I think most people would assume what was true in the ‘80s—that minorities don’t donate. We do, we just don’t at the rate that would be necessary to offset the percentage of our population afflicted.”
Remonia Chapman, president of the Association for Multicultural Affairs in Transplantation (AMAT), has made a career out of busting these myths and encouraging minorities to register to donate. AMAT offers professional development, cultural competency training and other resources to help those in the transplant field accomplish their life-saving mission in ethnically diverse communities.
One of the primary myths Chapman sees in her work is that individuals often believe that once they register to become an organ, tissue and cornea donor, physicians will no longer fight for their life in an emergency.
“This is simply not the case. The team that comes into recover organs is completely different from the team that is there to save your life in the emergency room,” Chapman said.
In Western Pennsylvania, that team is CORE, one of 58 federally designated organ procurement organizations in the U.S. CORE works closely with donor families and designated healthcare professionals to deliver the gift of hope by coordinating the surgical recovery of organs, tissues and corneas for transplantation. CORE also facilitates the computerized matching of donated organs, tissues and corneas.
Chapman said she often hears the misconception that donated organs are first transplanted to individuals with more resources.
“People often think that organs will go to someone who had more money or someone who was famous,” Chapman said. “That’s not the case either. There are monitored lines that individuals in need are placed on that have nothing to do with socioeconomic status or race. But the more of us who are giving into the system, the greater likelihood there will be to get organs to everyone in need.”
Chapman and Callender both mentioned religious beliefs as a particular area of concern among African-Americans when it comes to donating organs.
“There are often concerns that because organ donation is such an intimate thing that it would go against their religious beliefs, but there are no major religions that oppose donation,” Callender said.
Callender’s original pilot study and a series of follow-up efforts led him to establish the National Minority Organ Tissue Transplant Education Program (MOTTEP), the first program of its kind designed to decrease the number and rate of ethnic minority Americans needing organ and tissue transplants.
Organizations like MOTTEP, AMAT and CORE have found that the most effective way of dispelling these myths has been through community engagement.
“We’ve demonstrated that going into the community and having face-to-face encounters with culturally sensitive members is effective for increasing donors,” Callender said.
Chapman agrees, and said that by letting go of misconceptions, she believes individuals could see organ donation in a new light.
“Look at organ and tissue donation with a fresh perspective. Think of the lives that can be saved and enhanced by one person deciding to say yes to donation,” Chapman said. “Realize that all of us are stewards of each other. We’re stewards of humanity. And organ and tissue donation gives us the opportunity to express our humanity in a way that I don’t think anything else does.”
The Truth about Organ Donation
MYTH: If I’m in an accident, medical personnel won’t try to save my life.
TRUTH: The number-one priority of paramedics, nurses and doctors is to save your life.
MYTH: There’s no difference between brain death and being in a coma.
TRUTH: Brain death is the medical and legal determination of death. Unlike a coma, there is no recovery from brain death.
MYTH: Rich and famous people get organs first.
TRUTH: The United Network for Organ Sharing (UNOS) matches organs according to height, weight and blood type, followed by medical urgency and time on the waiting list.
MYTH: I’m too old to register to become an organ and tissue donor.
TRUTH: There’s no age limit for donation.
MYTH: My organs aren’t of any value because of medical illnesses.
TRUTH: Everyone can register to be a donor. A medical evaluation is done at the time of death to determine suitability for donation.
MYTH: Organs go to people who didn’t take care of theirs.
TRUTH: Most people are on the waiting list because they were born with or developed diseases that have caused organ failure.
MYTH: My family will have to pay for costs related to my donation.
TRUTH: Donors and their families are not responsible for any costs related to donation.
MYTH: Organs are bought and sold illegally.
TRUTH: Due to the complexity of organ transplantation, it would be impossible for organs to be bought or sold illegally.
Source: Center for Organ Recovery & Education (CORE)