Focusing on Systems and Policies to Solve the Kidney Transplant Equity Crisis

Minoritized individuals in the US experience both disproportionally high rates of kidney failure and low rates of kidney transplant. These disparities create an urgent health crisis, since kidney transplant is a superior treatment for kidney failure, resulting in a 30% to 70% lower risk of death and substantially improved quality of life compared to dialysis.¹ Among transplant options, living donor kidney transplant (LDKT) offers superior outcomes. However, only 30% of all kidney transplants result from LDKT. Furthermore, profound inequities in LDKT for Black and other minoritized individuals have been present for decades. In 1995 to 1999, minoritized individuals were between 17% (Hispanic or Latino individuals) and 55% (Black individuals) less likely than White individuals to receive LDKT. Disparities have worsened over time such that in 2010 to 2014, minoritized individuals were between 48% (Hispanic or Latino individuals) and 73% (Black individuals) less likely to receive LDKT when compared to their White counterparts.² These stark disparities are heavily influenced—but not entirely explained—by differences in individuals’ health care access and socioeconomic status. Adults older than 65 years are also less likely to receive LDKT compared to others, despite the fact that the median age at kidney failure is 64 years.

These well-described disparities result from a complex set of conditions. First, racial and ethnic minoritized individuals, women, older adults, and individuals with lower socioeconomic status are less likely to receive timely education and referral for kidney transplant evaluations when compared to White individuals or individuals with higher socioeconomic status. Cascading structural barriers (including low education, housing difficulties, low health literacy, or low income) and unequal access to health-promoting resources (including reliable transportation or flexible working schedules) further impede access to transplant centers. When disadvantaged individuals do reach transplant centers, they must navigate a labyrinth of evaluations, procedures, and consultations to advance through the transplant process. This journey can be delayed if the transplant evaluation uncovers unexpected medical conditions that must be addressed or resolved. Once medically cleared to proceed, candidates may wish to identify healthy living donors, a process that requires engaged social networks. This process can carry a considerable emotional toll for transplant candidates, including worry about the risks to donors’ health and financial well-being.³ Potential donors also face hurdles, as they must not only demonstrate their medical suitability, but also prepare to manage donation-related logistical and financial demands. For example, donors must have the ability to take time off of work and may need support in the postoperative recovery period. Many centers require adequate social support for transplant and donor candidates. However, assessing social support is subjective and can be evaluated unevenly, thus posing an additional barrier to those who are already disadvantaged by the transplant process.

In this issue of JAMA Internal Medicine, Butler et al⁴ use qualitative methods to characterize the experiences of older adults who undergo kidney transplant evaluation. The authors interviewed 26 diverse (31% self-reported Black or African American race), older (average age of 68 years) adults with advanced kidney disease and/or kidney failure. Potential recipients found the transplant evaluation process opaque, convoluted, and arduous. Although study participants were committed to achieving the desired goal of transplant, they faced fragmented systems, barriers to navigating and coordinating required processes, “seemingly unending” testing cascades, and uncertainty while awaiting transplant center decisions regarding candidacy. Participants reported feeling vulnerable, powerless, and sometimes unsupported in their efforts to move evaluations forward. They also described disappointing interpersonal communication with transplant teams and raised concerns regarding judgmental treatment for social disadvantage–related factors (eg, limited access to healthier foods), lack of their own agency in the process, hidden racism, and abrupt notification about declined candidacy.

In a Viewpoint also published in this issue, Macis and Plummer⁵ offer complementary reflections on the living kidney donation experience. Living kidney donors also must devote substantial time and resources (for travel, childcare, and time away from work) and possess optimal health and work conditions to achieve donation smoothly. Furthermore, the process of kidney donation is most accessible and feasible for those who have greater resources. Collectively, these insights high-light how health system interactions, processes, and social policies work synergistically to foster conditions that have exacerbated inequitable access to kidney transplants over time.

To date, many efforts to improve access and equity in kidney transplants have targeted the personal needs of potential recipients or donors while largely ignoring the ways in which health care system processes or broad societal policies can facilitate improved, equitable outcomes. For instance, clinical practice guidelines recommend that individuals with kidney disease initiate education and discussions about transplant and other kidney replacement options before kidney failure is imminent (when glomerular filtration rate is ≤30 mL/min/1.73m²) to allow time and support for shared decision-making and preparations for evaluation processes. However, health systems rely on inconsistent physician transplant referral practices, which may be biased, as the primary mechanism to get patients to transplant centers. This problem is exacerbated by a lack of data systems to facilitate and track candidates’ referrals and progress through evaluations, hindering quality improvement efforts. Furthermore, there exist evidence-based health system interventions to educate and guide candidates, including helping them identify potential living donors, but they have not been implemented on a national scale.^6,7 Compounding this gap, the National Living Donor Assistance Center (NLDAC), which was established by the Health Resources and Services Administration in 2007 to provide financial assistance to qualifying potential living donors, has narrow income limits for qualification and does not fully cover donation-related burdens such as childcare or lost wages. Additionally, uptake of assistance is limited because potential recipients or transplant staff have variable awareness and understanding of the NLDAC.

A paradigm shift in this approach is needed if these inequities are to be reduced. Insights from Butler et al⁴ and Macis and Plummer⁵ highlight the importance of realigning health system outreach, resources, and support mechanisms to enhance equity. First, it is imperative that all potential transplant candidates be identified and referred for transplant evaluation as early as possible regardless of their age and social backgrounds. Strategies to bypass potentially biased physician referral practices could include the use of electronic health record-based registries to systematically identify potential transplant candidates in health systems or the use of computer-automated processes to expedite referrals. Second, candidates need tailored education and support to improve their knowledge and navigation of the evaluation process, including the intricacies of identifying and securing potential living donors. Trusted health system personnel, including lay health educators, social workers, and community health workers, should be deployed to educate candidates and help candidates navigate the pretransplant process, including supporting their discussions with potential donors. Third, pretransplant and donation processes should be streamlined to minimize repeated cycles of testing that are perceived as endless and burdensome. Fourth, transplant center practices that disqualify potential recipients or donors based on a subjectively assessed lack of social support should be revised and replaced with standardized practices that help candidates address unmet needs. Centers should engage community-based organizations to assist with candidate or donor housing, transportation, childcare, or financial barriers. To support these actions, more robust policies to ensure comprehensive support for donors are needed. This includes policy revisions to loosen restrictive financial qualifications for using the NLDAC and to support other donor needs (such as work protections), as well as policies ensuring adequate donor health insurance coverage.

People living with kidney disease, along with their families and donors, have said that the current systems are not de-signed to support their pursuit of kidney transplants. By focusing on improving processes and policies to better prioritize their needs, meaningful progress toward improving transplant access and equity across the nation can be made.