Recentering Accountability for Disparities in Kidney Transplant Access
Authors: Syed Ali Husain
Journal: Journal of the American Society of Nephrology (2023)

Kidney transplant is the optimal treatment of patients with ESKD because of large survival and quality-of-life benefits compared with maintenance dialysis, yet most patients with ESKD never receive a transplant, and there are large demographic and socioeconomic disparities in access to transplant in the United States. In particular, despite these immense benefits of transplantation, Black patients in the United States are less likely to be referred for transplant evaluation, waitlisted for a transplant in a timely manner, or receive a transplant compared with their White counterparts. One area that has come under increasing focus over the past 5 years has been disparate access to preemptive waitlisting before dialysis initiation. Longer pretransplant dialysis exposure is associated with inferior post-transplant outcomes in a dose-dependent manner, and preemptive waitlisting and transplantation, therefore, provide the best ESKD outcomes. Unfortunately, consistent with other disparities in transplantation, Black patients are least likely to either be waitlisted or receive a kidney transplant preemptively when compared with patients of other races. In recognition of the need to improve equity in preemptive transplantation, a large focus has been placed on the role of eGFR equations as a structural barrier to preemptive waitlisting for Black patients with advanced kidney disease. Before 2021, creatinine-based eGFR equations that were the standard of care for estimating kidney function included a race coefficient applied only to Black patients that proportionally increased eGFR by approximately 16%–21% depending on the equation. Because preemptive waiting time eligibility for a kidney transplant requires GFR ≤20 ml/min, Black patients with advanced chronic disease with identical age, sex, and serum creatinine—the only other variables considered when calculating eGFR—as individuals of other races had higher calculated eGFR and, therefore, delayed access to preemptive eligibility.1 Recently, addressing eGFR as a contributor to disparities in preemptive transplantation has been the primary target of policy changes to improve equity in transplant, culminating in a ban on the use of race-based eGFR when waitlisting candidates and a new Organ Procurement and Transplantation Network (OPTN) policy aimed at restoring missed waiting time for Black candidates who were unjustly affected by the use of race-based eGFR equations as recently described in JASN.2 Although disparities caused by race-based eGFR are certainly important to bring to light and correct, the fact that eGFR-related policies have been the only significant racial equity–related OPTN kidney transplant policy changes since the implementation of the Kidney Allocation System in 2014 reflects a disappointing lack of progress by the transplant system on the key structural factors causing disparities in transplant access. Black patients are the most likely racial/ethnic group to be waitlisted after dialysis initiation rather than preemptively, often spending an extended time on dialysis before waitlisting,3 consistent with referral patterns rather than eGFR being the primary contributor to delayed access to transplant. Disparate access to referral to nephrology care for patients with CKD both decreases access to therapies to slow disease progression and shortens the runway for predialysis counseling and evaluation for preemptive listing. In addition, although racial differences in access to early nephrology care are well-established, even among patients initiating dialysis with age younger than 40 years and no documented comorbid contraindications to transplantation, Black patients have been found to have markedly lower likelihood of waitlisting than patients with White race even 5 years after dialysis initiation—a period that should theoretically supersede any effect of predialysis care.4 A survey of nephrologists' views on the causes of racial disparities in transplant evaluations provides valuable insight into the mechanism of these findings. Survey responses across four US regions demonstrated that "patients' desire to have a transplant" was the most commonly identified "very or moderately important reason" for these disparities, with other perceived factors including differences in social support, differences in expected adherence, and differences in comorbidities.5 This finding alone—that racial minorities were perceived by physicians to have a lower preference to receive a life-prolonging, cost-effective, quality-of-life–enhancing treatment—demonstrates that a key target to improve transplant disparities must be aggressively addressing the ways in which physicians allow the race of their patients to lead to biased assumptions that deleteriously affect counseling and transplant referral practices. Adding evidence to this finding is the prior demonstration that subjective assessments of relative contraindications to transplantation—such as substance use or low social support—are applied unequally by transplant centers to Black patients in a manner that deprives these patients of waitlist access.6,7 Differential access to high-quality dialysis facilities with characteristics that may increase the likelihood of transplant referral, such as favorable staffing ratios of staff and social workers, might also influence the likelihood of receiving the educational counseling and support needed to initiate a complete a transplant evaluation. The differential treatment of patients by their providers does not go unnoticed by the patients themselves. Pre-ESKD differences in counseling about transplant versus dialysis as a treatment option by patient race have been well described.8 Racial differences in discordant patient and provider reports of whether transplant counseling was provided have also been reported, albeit losing significance in adjusted models limited by low sample sizes, and patients who report that transplant counseling did not occur are less likely to be evaluated for a transplant—regardless of whether their nephrologist reports such counseling was provided.9 In addition, among patients of any race who initiate a transplant evaluation, those who perceive any form of discrimination (i.e., not limited to racial discrimination) during the transplant evaluation process have almost halved the rate of ultimately successfully completing the evaluation process even after adjusting for other patient characteristics including income, transplant knowledge, occupational class, and depression.10 In the face of increasingly vocal criticism regarding the effect of race-based eGFR on disparities in access to listing in recent years, the transplant system demonstrated an uncharacteristic ability to quickly and impactfully respond by allowing the restoration of missed waiting time and eliminating the use of race-based equations in determining preemptive listing eligibility. However, it is now time to expand beyond eGFR and apply equal urgency and effort to address the pervasive structural barriers and physician biases at the root of transplant disparities to develop policies aimed at effectively improving equity in transplant counseling, referral, and waitlisting rates. Given the high stakes of adequate transplant access for patients (improved survival and quality of life) and the federal government (large cost savings compared with dialysis), such policies must be broad and forceful. For referring providers, interventions might include not only mandated training in identifying internal biases and automated provider report cards to help reveal unrecognized biases in referral rates but also large reimbursement penalties for practices with disparities in which patients initiate and complete transplant evaluations. Transplant centers may similarly have reimbursement rates or financial penalties tied to rates of evaluation completion and successful waitlisting of candidates who were referred to them. Each of these possibilities also requires expansion of data collection on transplant referrals because there is currently no reliable way to identify which patients have been referred for transplant evaluation or have initiated an evaluation, nor is there any mechanism of easily identifying patients eligible for preemptive waitlisting who have not been referred. Finally, as the primary steward of the transplant system, the OPTN must also be held accountable for the persistence of disparities in transplant access over time. Given that the OPTN contract is currently in the process of redesign and renewal, clauses that explicitly tie contractor payments to achieving improved equity in access to transplant through increased rates of waitlisting and transplantation for disadvantaged groups should also be considered.