In the heart of Detroit, where nearly 78 percent of the population identifies as Black or African American, a life-and-death issue is unfolding that demands our attention. It’s about organ donation, a topic that might seem distant until you or someone you love is affected. A disproportionately low number of Black residents in Detroit—and indeed across the nation—are registered as organ donors, leaving an untold number of lives hanging in the balance.
Statistics from the Organ Procurement and Transplantation Network (OPTN) offer a sobering view. Nationally, as of 2022, 22 percent of the over 100,000 people waiting for an organ transplant in the United States are Black, yet only 13 percent of registered organ donors are from the Black community. Here in Detroit, according to Gift of Life Michigan, only 15 percent of registered organ donors are Black, compared to their White counterparts, who make up about 70 percent of the donor list.
This isn’t just a number game; it’s about the value of human life and social equity. The imbalance in organ donation impacts real people, leading to longer waiting times for organ transplants and, consequently, higher morbidity and mortality rates among Black patients. It’s a fact that Black patients have to wait, on average, 15 percent longer than White patients to receive a kidney transplant, one of the most common types of organ transplants.
Let’s also consider that compatibility for transplants often depends on matching blood types and antigens, which are more likely to be similar within specific racial and ethnic groups. The shortage of Black donors, then, not only lengthens the waiting list but also limits the chances of finding compatible organs, exacerbating health disparities.
If we take a broader view, we find that while minorities make up about 30 percent of all patients waiting for a transplant nationally, they constitute only 18 percent of all donors, according to OPTN data. It’s a disparity that extends beyond the borders of Detroit, making it not just a local but a national issue—one of urgent concerns that we must act on now.
Several factors contribute to this problem: lack of awareness, historical distrust of the medical system, and religious or cultural beliefs. These barriers aren’t insurmountable, and there are organizations, like the Minority Organ Tissue Transplant Education Program (MOTTEP), actively working to bridge the gap through education and community outreach.
The reluctance among the Black community to participate in organ donation is complex and multifaceted, but it’s important to understand that this hesitancy doesn’t exist in a vacuum—it is rooted in historical context. The legacy of medical exploitation, mistreatment, and systemic racism against Black Americans has bred a deep-seated distrust in the healthcare system. Infamous experiments like the Tuskegee Syphilis Study, which, unethically and without informed consent, studied the progression of untreated syphilis in Black men, have left indelible scars on the collective consciousness.
The issue of organ donation in the Black community is not just an American dilemma but a global one, as evidenced by NHS data from the United Kingdom. According to these figures, Black patients wait an average of six months longer for organ transplants compared to the general population. This extended wait is even more disconcerting when we understand that the best match for organ transplantation often comes from a donor of the same ethnicity. Yet only 2 percent of donors in the 2021/2022 period were Black, while Black people make up 4 percent of the population. This data highlights the glaring disparities in donor demographics and their consequential impact on waiting times. Furthermore, Black families are less likely than white families to consent to organ donation. Kidney patients, who make up the majority of those on waiting lists and face some of the longest waits, are especially affected, as kidneys need to be matched by both blood and tissue type. These disparities extend to other types of organ transplants as well. Remonia Chapman, Director of Public Education & Community Relations and Program Director of MOTTEP at Gift of Life Michigan, states, “Last year, Gift of Life Michigan had 463 organ donors, of which 30% were African American. We have continued to see our donation rate among African Americans increase due to our internal and external educational efforts.”
The NHS has declared an “urgent need” for more donors from ethnic minorities, emphasizing that this is a global issue that requires immediate and concerted action.
The life-and-death urgency of addressing organ donation disparities becomes all too real when we consider the story of Nancy Williams, a 54-year-old Detroit resident and kidney transplant recipient. Nancy waited five grueling years for a kidney, a wait that she never anticipated would be part of her life journey.
“I had no idea that I’d find myself in a situation where I would be waiting five long years for a kidney transplant,” she shared. Her lived experience amplifies the desperate need for more Black donors in the organ donation registry. “If it wasn’t for someone choosing to donate, I honestly don’t know if I would be here today,” Williams confessed. Inspired by her life-altering experience, she is now a registered organ donor, dedicated to continuing the life-saving cycle that once came to her rescue. William’s story is a poignant reminder that behind the statistics are real people whose lives are profoundly affected by our collective action—or inaction—on this crucial issue.
Contrarily, many believe that the importance of organ donation supersedes historical apprehensions, emphasizing the immediate need to save lives. However, this perspective is not universally accepted within the Black community, a sentiment encapsulated by James Sullivan, a 36-year-old Detroiter.
“I get that people are dying and in need of organs, but you’ve got to understand the hesitation from Black folks like me when it comes to stuff like this,” Sullivan says. “Our community has a long history of being mistreated and exploited by the medical system. So, how can I trust a system that has misused us for research and treatments? There’s a reason many of us are cautious, and it’s rooted in a history that’s hard to forget.”
Sullivan’s reservations underscore the complexities of addressing organ donation within a community still grappling with past and present systemic injustices. It’s a potent reminder that reconciling the urgent medical needs of today with the historical mistrust of yesterday remains a profound challenge.
The critical issue of organ donation disparities in the Black community gains an even more complex layer when we consider total body donation for scientific research and medical education. While the conversation often centers around organ donation for life-saving transplants, the topic of whole-body donation is another avenue where the gap is palpable. Like organ donation, the percentages of Black individuals who opt for whole body donation are significantly lower than their white counterparts.
This presents a two-fold problem. First, the lack of ethnic diversity in body donations impacts medical research and education, as scientists and medical students may not have the opportunity to study a diverse range of physiological traits and conditions. This lack of representation perpetuates a cycle where medical research becomes less inclusive, further exacerbating existing health disparities.
Second, whole-body donation serves as an option for those who may not be eligible for organ donation due to medical conditions, offering another way to contribute to advancements in medical science. Given the prevalence of certain health conditions like diabetes and hypertension within the Black community, whole-body donation could provide invaluable insights for researchers.
The numbers and the consequences speak loudly—whether it’s organ donation for transplants or whole-body donation for research, the underrepresentation of the Black community is a life-or-death issue interwoven with historical barriers and systemic inequities. Solving it requires not just medical intervention but a societal reckoning.
While strides are being made to increase the number of Black organ and body donors, progress is painstakingly slow. Barbara Rosso-Norgan, Manager of the Body Bequest Program at Wayne State University School of Medicine, sheds light on this with hard data.
“In the last 3 years, the percentage of persons who identify as Black race, the numbers have been as follows: 2020 – less than 9%; 2021 – less than 10.5%; 2022 – about 12.25%; 2023 – as of today’s date – 13.4%. The trend is rising, but not very quickly. We receive approximately 200 donors per year,” Rosso-Norgan stated. Her comments underscore the incremental increase in Black donors, highlighting both the slow yet positive change and the need for a more rapid response.
The disparities in organ donation and transplant waiting times for the Black community are not isolated phenomena but rather another manifestation of the systemic barriers that have been erected against this community for centuries. Health stipulations like these are part of a broader tapestry of inequity that includes unequal access to quality healthcare, education, and economic opportunities. This issue underscores how historic barriers continue to echo in the present day, affecting life-and-death situations. These are not merely statistics or waiting times; they are reflections of deep-rooted systemic issues that compound the suffering of Black families and communities. The ‘urgent need’ declared by health organizations for more Black and ethnic minority donors is more than a medical necessity—it’s a call for social justice. By confronting and addressing these disparities in organ donation, we are also chipping away at the larger, more entrenched barriers that have hindered the Black community for generations.
Additionally, there have been instances where the Black community has been underrepresented or misrepresented in medical research and treatment options. This history contributes to skepticism about the medical establishment, including the organ donation system. The result is a cycle of hesitancy that puts lives at risk, reinforcing the need for sensitive, informed, and culturally competent outreach and education to break down these barriers.
So, what can you do? The first step is to educate yourself and others. Know that organ donation doesn’t just save the life of the recipient; it’s a profound act that touches families and communities. It’s an opportunity to impart the most priceless gift possible—the gift of life. If ever there was a time to confront these inequities, that time is now. This isn’t just a medical issue; it’s a moral imperative for us as a community. Lives are literally dependent on it.