Feb 17, 2025 Story by: Editor
Marc Thompson experienced severe side effects from the dialysis that kept him alive, including leg cramps, itching, disrupted sleep, and daily weight gain due to fluid retention. At 35, he was diagnosed with end-stage kidney disease, requiring four to six hours of dialysis three times a week at a Michigan facility to compensate for his failing kidneys.
After enduring this grueling treatment for a year, Marc and his family sought a live donor for a kidney transplant, as the wait time for an organ from a deceased donor could extend up to five years. In 2008, his cousin, Macey Levan, stepped forward to be tested as a potential donor.
At the time, Macey was a law student in Indiana and unable to travel to Michigan, where Marc was listed for a transplant. Instead, Marc’s care team coordinated with Macey’s local hospital in Bloomington, Indiana, and Indiana University to facilitate her evaluation. Following this complex process, she successfully donated her kidney to Marc in 2009.
Marc’s case was fortunate, particularly as a Black man. Black, Latino, and Native American patients are disproportionately affected by end-stage kidney disease but are significantly less likely to receive live-donor kidney transplants. While transplants are ultimately more cost-effective than dialysis—Medicare spent nearly $100,000 per dialysis patient annually in 2021, with private insurers paying even more—many Black patients still struggle to access them.
Black individuals have nearly four times the incidence of end-stage kidney disease, yet their likelihood of receiving a live-donor transplant is more than four times lower than that of White patients. As the National Academies of Science, Engineering, and Medicine noted in a 2022 report, “The current organ transplantation system is demonstrably inequitable.”
A 2004 study revealed a concerning bias among nephrologists: 81% believed kidney transplants improved survival rates for White patients, but only 69% held the same belief for Black patients. This reflects underlying interpersonal racism within the transplant system.
Racial disparities in kidney transplants have existed since the procedure’s inception in the 1950s, yet researchers still struggle to pinpoint the exact causes. Studies have ruled out differences in social networks, medical eligibility, comorbidities, socioeconomic status, and broader social determinants of health as primary factors.
However, residential segregation has emerged as a significant obstacle for Black patients seeking live-donor kidney transplants. National data show that Black candidates living in highly segregated neighborhoods are 10% less likely to receive a transplant from a live donor, while residential segregation has no such effect on White candidates.
Further research has found that residing in racially or ethnically segregated neighborhoods is also linked to worse post-transplant outcomes, including higher mortality rates, transplant failure, and even dementia. These disparities may be due to systemic underinvestment in predominantly Black neighborhoods, leading to multiple stressors, including poor living conditions.
Additionally, because end-stage kidney disease can be hereditary, Black patients often have family members who suffer from the same condition, reducing the pool of potential donors.
The location of the transplant center also plays a crucial role. Black candidates listed at centers in minority-dominated areas are 64% less likely to receive a live donor transplant than White candidates listed at centers in predominantly White areas.
The financial burden on donors can be substantial, as Macey personally experienced. While the recipient’s insurance typically covers medical expenses related to the transplant, donors often face additional costs such as travel, accommodation, and lost wages. On average, donors incur about $4,000 in out-of-pocket expenses, though costs can rise to as much as $17,000, further discouraging donors from lower-income communities.
Some states have taken action to address these financial barriers. In 2023, New York implemented a law providing up to $10,000 in direct reimbursements to living organ donors for expenses not covered by insurance. The law aims to increase the number of donors, as New York has historically had one of the lowest rates of registered organ donors in the country.
The urgency for change is clear: structural racism must be dismantled to address racial disparities in live-donor kidney transplants and broader healthcare inequities. Simply identifying these disparities is not enough—active steps must be taken to eliminate systemic racism and promote health equity.
Public health and medical professionals must investigate how segregation limits healthcare access and develop interventions that improve care for marginalized groups, incorporating patient perspectives. Policymakers should also create initiatives that invest in underserved communities and provide national funding for medical centers in segregated and resource-poor areas.
Equity in live-donor kidney transplantation should be attainable for Black individuals like Marc, who is battling end-stage kidney disease. Now is the time to take meaningful action and fulfill the promise of the National Organ Transplant Act: ensuring fair and equal access to transplantation.
Macey’s decision to donate her kidney to Marc shaped both of their futures.
Her experience inspired her to dedicate her career to improving access to live-donor kidney transplants for underserved communities and reducing the obstacles to organ donation. She now serves as vice president of patient and donor affairs for the Organ Procurement and Transplantation Network.
Source: Harvard Public Health
