The African American Transplant Access Program: Mitigating Disparities in Solid Organ Transplantation

Abstract

Black Americans experience end-stage kidney disease (ESKD) at a disproportionately higher rate than other racial and ethnic groups in the United States. Kidney transplantation provides the best outcomes for patients with ESKD. However, Black patients frequently have decreased access to kidney transplantation. This article summarizes the robust literature on disparities in transplantation for Black patients and presents a practical solution to this complex issue by redesigning the transplant access process for Black patients challenged by structural and institutional barriers. The authors provide a detailed overview of a novel African American Transplant Access Program (AATAP) with its pillars of cultural congruency, trust, health literacy, and psychosocial support. This overview includes a thorough description of the program's conceptualization, the process of creating the program, the preliminary results, and guidance to establish similarly culturally congruent transplant access programs.

FIGURE 1:. Four Pillars of the African American Transplant Access Program Intervention

Four key pillars support the structure and function of the African American Transplant Access Program (AATAP) effort: cultural congruency, trust, health literacy, and psychosocial support. These elements were informed by both the literature and the input of local community leaders. Of central importance is the leadership of the AATAP champion, who, ideally, shares a background with the community that the program intends to serve. Source: The authors NEJM Catalyst (catalyst.nejm.org) © Massachusetts Medical Society

FIGURE 2:. Process Map for the African American Transplant Access Program

This process map outlines the series of events that ensue after a patient is referred to the African American Transplant Access Program (AATAP). Once the referral has been reviewed by the multidisciplinary AATAP team and deemed appropriate, the patient is brought in for an intake appointment in which they meet the AATAP clinic nurse (step 1), health literacy expert (step 2), social worker (step 3), transplant nephrologist (step 4), and surgeon (step 5). After this appointment, their transplant candidacy is integrated into the standard Northwestern Medicine (NM) process. However, the AATAP team remains available to place referrals, address health literacy or nonadherence concerns, provide weight-loss coaching, and to support them if their evaluation stalls prior to returning them to the standard process. The AATAP may need to engage referred patients multiple times during their time in the standard portion of the NM transplantation process as obstacles are encountered before and after the patient has advanced to the wait-list. Each patient has a unique journey that the AATAP team hopes will end in a successful transplant. Key: Orange box = AATAP transplant process. Purple box = standard NM transplant process. Gray box = additional information. White diamond box = decision tree. Red line = decision is no. Green line = decision is yes. Black line = patient flow without decision tree. PT = physical therapist Source: The authors NEJM Catalyst (catalyst.nejm.org) © Massachusetts Medical Society

FIGURE 3:. External Referrals from Dialysis Centers to the African American Transplant Access Program

The African American Transplant Access Program (AATAP) was piloted in late 2018 and was officially launched in January 2019. In that first full year of the program, 2019, external referrals from community dialysis centers to the AATAP were not formally documented. In the years since, the growth of the program has been notable: 11 in 2020, 65 in 2021, 74 in 2022, and 104 in 2023. Source: The authors NEJM Catalyst (catalyst.nejm.org) © Massachusetts Medical Society

FIGURE 4:. Kidney Transplant Wait-list Additions at Northwestern Medicine

This figure provides yearly information about the number of non-Hispanic Black patients added to the kidney transplant wait-list at Northwestern Medicine (NM) compared with non-Hispanic white patients in the years before and after AATAP implementation. It demonstrates that since AATAP’s creation, there has been steady growth in both the number and the proportion of non-Hispanic Black patients wait-listed at the NM transplant center. By 2023, 151 out of 354 patients wait-listed for transplant surgery (more than 42%) were non-Hispanic Black. Source: The authors NEJM Catalyst (catalyst.nejm.org) © Massachusetts Medical Society

FIGURE 5:. Patient Care Overview for the African American Transplant Access Program

This figure provides yearly information about the number of evaluations opened, the number of patients added to the wait-list, and the number of patients ultimately transplanted by the African American Transplant Access Program. These data demonstrate the steady growth of the program — and its impact — over time. Source: The authors NEJM Catalyst (catalyst.nejm.org) © Massachusetts Medical Society