In North Carolina, African Americans account for more than half of the more than 3,000 patients on an organ transplant waiting list, a reality that has prompted healthcare providers’ and advocates’ calls to encourage organ donation among black residents. Outreach efforts in recent years have targeted black churches, local DMVs, health centers, and other majority-African-American spaces.
With bipartisan support behind organ donation and an outpouring of dollars to increase awareness around the issue, some advocates say that change is on the horizon. However, meeting the needs of every person of color on the organ donor list would require dispelling myths about organ donation and appealing to a group that has long been skeptical of physicians and medical research.
But proponents remain resilient, saying that the outcomes would benefit African Americans, a group disproportionately affected by diabetes, kidney disease, and other chronic diseases. Such a statewide movement could make waves nationally. The chronic illnesses plaguing the black community, brought on by a combination of dietary and environmental issues, often culminate with the failure of a vital organ — signaling a greater need for donations.
“It’s an education problem. In the past, there haven’t been many opportunities to spread the word,” Sharon Hirsch, the executive director of Donate Life North Carolina, told ThinkProgress. Hirsch and her colleagues work with state partners to create curricula and provide information about organ donation to North Carolinians of all ages. They also tell the story of people like NFL star Chris Henry, whose mother agreed to donate his organs after his death in a car accident, a move that saved four lives.
“Sharing stories is key. Hearing about someone’s experience makes a difference because you know someone who has been affected. Also thinking about a person you know might be in need of a transplant or is on dialysis,” Hirsch said.
Every 10 minutes, another name makes it onto organ donor lists around the country. Many of those people may never live to get the transplant they seek. According to Donate Life USA, an average of 21 people die each day waiting for an organ. African Americans account for more than 35 percent of the more than 120,000 people on the national list for kidney donations, according to numbers compiled by the U.S. Department of Health & Human Services.
But the health and quality of their organs precludes many Americans from joining a donor list. A 2014 study presented at the American Society of Nephrology found that preventable health conditions — including obesity, alcoholism, diabetes, skin cancer, high blood pressure, HIV, coronary artery disease — disqualifies a majority of Americans from donating.
If people feel inclined to do so, they can also donate their organs while they’re still living. But only 30 percent of Americans become living donors because high health care costs prevent them from carrying out the altruistic act. Donating organs can cost anywhere between $5,000 and $20,000 and six weeks out of work, a cost burden that 90 percent of Americans can’t take on without incurring debt. Before the passage of the Affordable Care Act, donors also couldn’t receive coverage for their follow-up care because their insurers designated their surgery as a preexisting condition.
On top of that, African Americans may have specific barriers that make them reluctant to donate their organs and participate in clinical trials for medication that would benefit them. One reason, advocates speculate, stems from a concern that donors get subpar care in hospitals from medical professionals eager to harvest their organs after they die. For many, this belief stems from a deeper mistrust of the medical establishment, spurred by its history of experimentation on and exploitation of African Americans. The infamous Tuskegee syphilis study, during which federal researchers duped and failed to treat African American patients with syphilis for decades, still serves as a point of reference for skeptical people of color.
Another reason for low organ donations among African Americans may be religious. Members of this group along with their South Asian and Chinese counterparts share this belief that their bodies must be “whole” in order to be accepted in the afterlife. Additionally, there’s fear that organ donation mutilates the body, erasing the possibility of an open-casket funeral. A study conducted in 2007 suggested that though clergy members didn’t explicitly stand against organ donation, they acknowledged that what they perceived as inequalities in the donation and transplantation discouraged them from promoting the practice among their congregants.
Some medical professionals, like Dr. Elaine Hart-Brothers, say that dispelling these myths about organ donation requires connecting African Americans with medical professionals and community organizations they trust. Hart-Brothers, who founded the Durham, NC-based Community Health Coalition Incorporated, a minority health care nonprofit, distributes a health newsletter in which she promotes diet, exercise, and organ donation.
Hart-Brothers told ThinkProgress that consistent outreach and genuine relationships build the foundation on which community leaders can have difficult conversations, and lay concerns about organ donation to rest — while simultaneously touting healthy diets and behaviors.
“Organ donation is something that should be discussed in church and one-on-one. Information should always be spelled out,” Hart-Brothers said. “It’s something that people of color have to think about along with prevention of chronic diseases. It will help decrease the disparity. Trust and communication would be better. All this plays into health equity. Diversity of the medical workforce and donor list goes along with building trust, improving health, and spreading altruism and compassion.”
Hirsch, whose organization also does faith-based outreach, agreed, pointing out that there are specific messages about organ donation that could resonate with people of color who identify as religious. “It’s an extraordinary legacy you can leave when you’re gone,” she said.