Why Black People Don't Want to Donate Their Organs
It's hard to make a case for the altruism in organ donation when our medical system has historically not been altruistic to us.
Mar 29 2017, 5:33pm
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My Facebook friend recently became very passionate about organ donation. Though we haven't been 'real-life friends' for some time, his posts about his mother who died waiting for an organ transplant made me question my own naiveté. It has never been easier to register as a donor, but up until those daily status updates, I assumed my organs would end up wherever they were 'supposed to.' The reality is, however, there are over 100,000 people on the waiting for an organ in the United States, and a new name is added to the registry every ten minutes. Of that number, 30 percent of them are black like me. While I'd recently read that black people were reluctant to register as donors, my friend's posts forced me to face my own suspicions about the process.
"Are you an organ donor?" I asked my father over tea one morning.
"Mickey Mantle was an alcoholic, but they gave him two liver transplants," my dad said. "I'm not letting anyone take my organs."
Though my father's information is incorrect, (Mantle only had one transplant, but he was able to procure a kidney only 48 hours after diagnosis), his sentiment is clear: The medical system cannot be trusted. My dad is not a conspiracy theorist, and history is overrun with examples of black bodies exploited in the name of 'science.' From the notorious Tuskegee syphilis experiments to heinous gynecological experiments that were conducted on enslaved women—most black people are raised with a strong distrust of the American healthcare system. It's hard to make a case for the altruism involved in deceased organ donation when our medical system has historically not been altruistic to black people.
When I think of the individuals that make up the organ transplant list—fill it with faces of friends and loved ones who look like us—it becomes a bit more complicated. How much distrust is warranted, and how much is paranoia?
"African Americans have really been targeted over the last 20 or plus years," Jerry McCauley, chief of nephrology at Thomas Jefferson Hospital, and chairman of minority affairs at the United Network of Organ Sharing (UNOS), tells me. He adds that the number of deceased black donors is higher than the general population. According to the Organ Procurement and Transplantation Network, the total number of deceased organ donations in 2016 was 9,971, with black people contributing about 1,570 organs. While black folks make up 13 percent of the population, they effectively make up about 16 percent of the deceased donor population.
McCauley says suspicions do remain, but he believes that attitudes around organ donation are changing because people are educating themselves about the realities involved in being a donor.
"Race is not a variable [for organ rejection]. One of the points that I make all of the time in these kinds of discussions [is that] African Americans have to understand that more African Americans get more white organs than the whites get black organs because there are more whites in the population," McCauley says. "So if organs are going anywhere, they're going from the white population to the black population."
The path of deceased donor organ to waiting patient is more complicated than we might think. In the event of my untimely death, I'd have to be confirmed brain dead before my organs would be considered for transplant. Assuming that I was on the donor registry, doctors would list organs on a national registry with an emphasis on people nearest to me.
Even with proximity as a criterion, there are other factors that might make my organ a better fit for one person over another. And the list isn't solely chronological: If there is no one nearby in need of those organs, they would be opened up beyond the region. In fact, given the extremely short viability of organs like hearts and lungs, more than 60 percent of those donated each year end up discarded. In other words, it's highly unlikely that a sinister doctor is waiting somewhere to prey on my organs.
"The reality is that, for a healthcare professional, jumping the list is professional suicide," McCauley says, further assuaging my fears. Despite his calls for those in the black community to donate, however, McCauley explains that racial disparities have affected those waiting. McCauley has worked with UNOS since its inception in 1986 and says that, historically, the stipulations used to gauge who is eligible for kidney transplant favor white people, resulting in black donors waiting three times as long as their white counterparts. The first stipulation was the overemphasis on HLA antigens—a protein marker more prevalent in white people—as a factor for kidney viability.
This meant that a black person on a donor list would not be seen as a viable match for a white kidney that had a higher frequency of HLA antigens. The other stipulation dictated that patients were not put on the donor list until after they have been evaluated—as in, once they start dialysis. Because black people tend to seek treatment later, by the time they are evaluated they may no longer be the strongest candidate for a transplant. As a result of two stipulations, black people effectively languished on donor lists.
Thankfully that's changed, McCauley says, adding that "it took 20 years and a lot of very angry conversations." He points to a new allocation system, started in December 2014, that has helped close the access gap between African American and white organ donor recipients.
But while listening to McCauley explain the difficulties that black donors have been up against, I feel the rage that has kept me from registering bubble up. My ambivalence has never been about the idea that my liver will end up in Ben Affleck's body without my consent. Rather, it stems from a deep-seated resentment for the ways bureaucracy demands my community's cooperation without promising me any of the rewards.
I'm asked to donate to an organ registry that might exclude me. I'm asked to participate in a healthcare system that is five times more likely amputate my limb, or deny me pain medication given to white Americans. It is hard to understand why I should give the gift of my organs when, while alive, I am systematically denied resources and opportunities that could prolong and improve my quality of life.
As the current administration pulverizes reproductive rights—which will disproportionately affect women of color)—and threatens to leave more than 24 million Americans without health insurance, the temptation to hoard my black organs is more tempting than ever. It's a way to exert autonomy under circumstances that render me powerless. And that's why I've decided to sign the back of my license with black sharpie. If I let resentment close my heart and govern my decisions, I'm no different than the bureaucratic forces I despise.