As much as COVID-19 has exacerbated long-standing health disparities in America, Black people have had a 70% greater chance of death due to COVID-19 than whites. However, this is not the only shocking inequity in American health care. Tragically, the effort to save lives through organ transplantation is marred by a deep chasm separating the treatment of Blacks from whites.
Recent research shows Black people in need of a transplant are less likely than their white peers to get it, and when they do receive a transplant, they have a higher risk of post-transplant mortality.
The United Network for Organ Sharing (UNOS) revised its allocation system to improve access to organs among the sickest patients and reduce racial and regional disparities.
Evidence for this situation was reported at last year’s American Heart Association’s Scientific Sessions conference. The preliminary research suggested that Black patients experienced longer wait times for a heart transplant than other racial and ethnic groups. Black patients in the United States typically wait a year longer for organ transplants than White patients do— and that’s just one of many inequities.
In addition, the study notes that some Black families may not be approached regarding organ donation requests in the same manner — or as frequently — as White families and that they sometimes view those interactions less favorably.
In the new study, researchers analyzed heart recipient characteristics and outcomes for 32,353 people spanning about a decade of UNOS data from 2011-2020.
All institutions involved in organ transplant wait-listing and distribution are connected through the Organ Procurement and Transplantation Network (OPTN), which the nonprofit United Network for Organ Sharing manages.
The federal contract for the OPTN is up for renewal in 2023, so this is a crucial opportunity to heighten accountability requirements, including those ensuring equity.
To promote equity, health systems and those working in them must recognize and minimize bias and racism, sexism, ableism, and other “isms” that devalue certain groups.
Perspectives that stereotype or blame patients lead providers to undertreat those patients and communicate poorly with them. Thorough and effective communication is crucial because it builds trust and helps patients engage in making informed decisions about their care. Equitable transplantation care must also acknowledge and address patients’ social determinants of health, which can present obstacles and impact their health-related social needs.
For one, OPTN should use specific, standardized data to measure participating institutions’ performance and improvement — and those data should be disaggregated by race, ethnicity, language, and other sociodemographic factors. It should assess such domains as patient access — including the number of people referred, evaluated, and wait-listed — the number of patients who receive transplants and their survival rates, and the numbers of donated organs that are transplanted as well as those that go unused.
As new metrics are developed, accountability requires seeking input from patients and families in their creation and following up with transparency and public reporting of the data. As OPTN organizations review and report their performance, they should invite members of groups experiencing inequities to determine how to remedy them. Participation should be meaningful, not performative.
For instance, patients who have not yet started dialysis can join the waiting list for a kidney transplant in advance and gain “waiting time credit,” which can help them qualify for a kidney more quickly. However, the report recommends that patients with end-stage kidney disease should only gain this credit once they have started dialysis – a move that would benefit Black patients, as they have typically logged more time on dialysis than Whites by the time they have been offered access to the waiting list.
I interviewed Brooklyn resident Roshaun Flowers, age 35, who was diagnosed with type one diabetes about ten years ago. Her health deteriorated in 2021, and she now lives between hospital stays.
She confirms that studies showing black patients needing organ transplants take a year longer than white patients are correct.
“Obviously, it is not fair. Unsurprisingly, the lack of equity in healthcare continues to affect me and many others in terms of the timely receipt of treatment and the waiting period for organ transplants. A black person’s life and needs are of less value than a white person’s. I hope that’s not true because my life is at risk.”
After medications and treatments, Roshaun Flowers was placed on dialysis in August 2022. She currently uses a cane to walk and with the help of an aide. Her most serious difficulties right now are not being able to walk and do day-to-day activities. “I am always tired and depending on other people’s help.”
