Black Americans face disproportionately high rates of chronic illnesses that lead to organ failure, yet many remain hesitant to register as organ donors. Misinformation, mistrust, and low health literacy are driving this disparity, leaving families unprepared when transplants become necessary.
Andrew Jones, a heart transplant recipient, once believed organs were stored “on ice in a beef block somewhere.” His experience battling viral myocarditis changed that—but it also revealed how little his community understood about the process. “Organ donation conversations, they’re just not had in Black and Brown households,” he said.
Distrust deepened after reports of unethical practices at organ procurement organizations (OPOs). A New York Times investigation found some OPOs pressured families and pursued donors prematurely. Health Secretary Robert F. Kennedy Jr. responded by decertifying one agency and threatening others, citing 351 cases of negligence.
Low health literacy compounds the issue. Nine out of ten adults struggle to understand health information, with Black, Hispanic, and Native American communities scoring lowest. This lack of understanding fuels conspiracy theories—like the belief that doctors won’t save registered donors—and spreads rapidly on social media.
Community outreach efforts like The Decision Project in Baltimore are helping. By combining education with tangible support, donor registration rose 500% in five years. “We stay because we want to take away those myths,” said director Ieesha Johnson.
Still, experts argue education must begin earlier and come from trusted sources—not just OPOs. Without it, mistrust will continue to cost lives.
See: “Why Do We Believe Organ Donation Conspiracies?” (October 29, 2025)
