Complex role of insurance in living donor kidney transplantation: Perspectives from the affordable care act era

Abstract

The landscape of organ transplantation in the United States reflects a complex and multifaceted reality. According to the latest OPTN/UNOS statistics on kidney transplants, 20446 deceased organ donors contributed to these life-saving procedures, alongside 5798 living donor kidney transplants (LDKT). Despite these advancements, the transplant waiting list remains alarmingly long, with approximately 140165 individuals still awaiting a kidney. In addition, there are still inequalities in access to LDKT. As of December 31, 2022, Black adults accounted for 31.7% of the transplant waiting list, yet only 12.8% of LDKT recipients, compared to 34.1% of deceased donor kidney transplant (DDKT) recipients that year. Conversely, White patients represented 35.5% of those on the list, but comprised 61.4% of LDKT recipients and 35.3% of DDKT recipients. A majority of adult LDKT recipients (54.5%) had private insurance at the time of transplantation, compared to 26.9% of DDKT recipients. In addition, 62.5% of patients with a kidney transplant from a deceased donor were covered by Medicare, in contrast to 37.6% of living donor kidney transplant recipients. In 2022, 33.3% of adult living donor kidney transplant recipients were transplanted without prior dialysis, compared to 12.1% of deceased donor kidney transplant recipients. These data highlight the critical need to dismantle barriers to transplantation, particularly those rooted in insurance coverage and socioeconomic disparities.

Key Words: Living donor kidney transplantation; Renal transplantation; End-stage renal disease; Chronic kidney disease; Pediatric nephropathies

Core Tip: The affordable care act’s dependent coverage provision for young adults under 26 offers more than insurance, it offers a lifeline during critical educational and clinical transitions. In nephrology, where delays can mean irreversible harm, continuity matters. Yet this reform reveals a tension: access has widened, but not equitably. Provider deserts, bureaucratic inertia, and systemic stratification still fracture care. This article contends that without structural redistribution, policy is performance. The promise of reform is undermined by persistent exclusions leaving those most at risk stranded between legal entitlement and real-world abandonment.

TO THE EDITOR

We recently had the opportunity to read the article[1] published in your prestigious journal. The authors address a very timely topic that lies at the intersection of health policy and disparities in access to living donor kidney transplantation (LDKT). Specifically, the use of the affordable care act as a natural experiment to test this hypothesis is truly innovative and insightful. This study is also notable for its methodological rigor, drawing on a robust dataset from the United States Transplant Registry and applying advanced statistical techniques related to competing risks. Focusing on young adults aged 22 to 25 provides a unique perspective on how expanded parental insurance coverage affects their lives. Effectively, higher private insurance coverage after the implementation of the affordable care act (ACA) did not lead to an increase in LDKT rates-a finding that contradicts commonly held hypotheses and thus warrants further investigation into the socioeconomic causes of transplant disparities.

The study by Perry et al[1] offers a compelling and methodologically sophisticated addition to the expanding scholarship on disparities in access to LDKT. By harnessing the ACA as a quasi-natural experiment, the authors transcend the limitations of conventional cross-sectional or purely observational designs, paving the way for more credible causal inferences about the interplay between insurance coverage and transplant outcomes.

What sets this research apart is its incisive focus on a narrowly defined, transitional age group, young adults aged 22 to 25, who occupy a liminal policy space shaped by the ACA’s extension of parental coverage. This cohort, often blurred in broader demographic aggregates, emerges here as analytically distinct and policy-relevant. Unlike earlier studies that treated insurance status as a static, binary construct, Perry et al[1] interrogate the dynamics of insurance coverage itself: They examine how shifts in payer mix and temporal transitions between coverage types may influence access to LDKT in ways that more simplistic categorizations obscure.

Equally notable is the study’s implicit provocation toward future inquiry. Although it does not directly model regional variation, its design gestures toward the significance of state-level policy heterogeneity, particularly the uneven landscape of Medicaid expansion, and the spatial distribution of transplant infrastructure. These systemic variables, too often marginalized in national analyses, may profoundly condition the effects of private insurance on transplant access. By foregrounding these structural dimensions, the study nudges the field toward a more ecological understanding of inequity—one that moves beyond individual-level determinants to interrogate the institutional architectures that sustain them.

It is very helpful to contextualize the landscape in which organ transplantation has taken place in the United States. The most recent statistics from the OPTN/UNOS[2] cite the following data for 2022 about kidney transplantation: Among the transplants performed, 20.446 deceased organ donors supported these life-saving surgeries and 5.798 LDKT.

Despite this progress, the waiting list remains very large with over 140165 patients on the waiting list. Moreover, there are still inequalities in access to LDKT. As of December 31, 2022, 31.7% of adult candidates on the waiting list were black, although black patients made up only 12.8% of LDKT recipients, compared to 34.1% of deceased donor kidney transplant recipients that year. White patients made up 35.5% of the waiting list, but 61.4% of LDKT recipients and 35.3% of deceased donor kidney transplant recipients were white. The majority of adult LDKT recipients (54.5%) had private insurance at the time of transplantation, compared with 26.9% of DDKT recipients. In addition, 62.5% of deceased donor kidney transplant recipients were covered by Medicare, compared to 37.6% of LDKT recipients. Notably, 33.3% of adult LDKT recipients in 2022 were transplanted without prior dialysis, compared to 12.1% of deceased donor kidney transplant recipients.

These numbers highlight the importance of removing barriers to transplantation, including those related to insurance coverage and socioeconomic disparities. The findings of Perry et al[1]. Are particularly useful in this context, as they suggest that private insurance per se cannot overcome the structural inequalities that determine access to transplantation.

Moreover, the OPTN/UNOS data lend striking empirical weight to the study’s central claim, exposing entrenched disparities in LDKT access that correlate not only with insurance status but also with race. The numbers are clear: White patients, while comprising just 35.5% of those on the transplant waiting list, represented a dominant 61.4% of living donor recipients. This overrepresentation signals the operation of systemic advantages, structural, institutional, and perhaps cultural, that insurance alone cannot explain. Further compounding the inequity, 54.5% of LDKT recipients held private insurance, in contrast to only 26.9% among deceased donor kidney transplant recipients. Yet despite these imbalances, Perry et al[1] observed no discernible post-ACA increase in LDKT access, a finding that seems, at first glance, paradoxical. But this tension is precisely where the study makes its most provocative contribution: It calls into question the presumed linearity between insurance expansion and health equity, suggesting instead that the efficacy of insurance may be contingent, shaped and constrained by intersecting forces such as race, class, and geography.

To meaningfully interrogate these layered dynamics, future studies must resist monolithic framings and instead adopt stratified or interactional methodologies—multivariate regression models capable of testing not just main effects but also the subtle moderation patterns that emerge when insurance status collides with socioeconomic and demographic variables. The goal is not merely to quantify disparity but to map its architecture: To trace how structural barriers intersect and reinforce one another in ways that blunt the redistributive potential of policy interventions like the ACA. Only through such analytic granularity can the field move beyond descriptive accounts and toward actionable insights that inform more equitable models of transplant access.

Although the study provides valuable insights, there are areas where additional analysis could deepen our understanding:

The authors rightly point out that socioeconomic variables, such as individual income and local access to transplant centers, were not considered, so a more comprehensive understanding of these results is not possible. Qualitative data or stratification of the cohort based on specific demographic clusters, such as education level or regional economic indices, would further complete the picture.

Centrally, education level and health literacy can wield outsized influence in the complex terrain of transplant evaluation. Even when insurance coverage is ostensibly secured, the ability to decode bureaucratic requirements, advocate effectively in clinical encounters, and persist through often opaque eligibility thresholds hinges on cognitive, cultural, and communicative capital. Insurance may open the door, but without the tools to walk through it, patients remain stuck at the threshold. Add to this the gravitational pull of income inequality: For low-wage workers or those in precarious employment, the very notion of taking unpaid leave for donor screening or recovery—let alone accompanying a family member through the process—is not just difficult; it borders on impossible. And then there is geography: A silent determinant. The maldistribution of transplant centers across urban and rural divides creates invisible geographies of exclusion, where miles translate into missed appointments, delayed evaluations, and eroded hope, patterns meticulously documented in the scientific literature[3-5] yet often rendered invisible in policy discussions focused narrowly on coverage metrics.

These are constitutive forces. They reshape, dilute, and, in some cases, nullify the intended benefits of insurance expansion. Insurance status is refracted through a social prism composed of class, race, place, and privilege. To treat coverage as a standalone determinant of LDKT access is to mistake the map for the terrain. Disparities persist not simply because some lack insurance, but because others possess an accumulation of advantages—relational, spatial, epistemic—that render the system navigable.

Future inquiry, then, must rise to meet this complexity. Multivariate models, while necessary, are insufficient unless they are calibrated to test for interaction effects—moments where race and region, or education and employment, converge to amplify or attenuate the influence of insurance. At the same time, qualitative inquiry is not an ancillary supplement but a methodological imperative. Patient narratives, clinician perspectives, community-based insights—these provide the thick description needed to expose where access breaks down, not in principle but in practice. Only through such integrative, cross-modal approaches can we begin to chart a path toward equity—not in name, but in lived experience.

In addition, the hypothesis that a shift in the mix of payers has reduced the socioeconomic advantage of privately insured applicants in the post-ACA period is highly plausible, but needs further confirmation. Indeed, such a hypothesis would be supported by a comparison with populations unaffected by such trends - for example, pediatric or older adult cohorts. In addition, a comparison of outcomes between states with and without Medicaid expansion may highlight the interaction between regional policy nuances and insurance coverage that influence access to LDKT. In addition, the results can be supplemented by discussions of how regional differences in healthcare infrastructure and availability of transplant centers may have influenced outcomes. For example, did candidates in states with large transplant networks fare better than those in less well-resourced areas?

FUTURE DIRECTIONS

Developing effective community intervention programs to improve insurance coverage and access to LDKT requires a multi-pronged approach that addresses systemic barriers, community education, logistical support, and policy advocacy. One of the most important aspects is the work of Community Health Workers (CHW) who can address important issues related to transplant inertia. CHWs can help patients and family members understand the requirements for transplantation, connect with transplant centers, and assist with screening, finding a matching donor, and financial management. In addition, a peer-to-peer support group LDKT can help potential donors and recipients reach their goal. The goal is to create community-led support systems around the emotional, financial and logistical aspects of LDKT. This may include insurance information, financial planning assistance and group therapy sessions led by former transplant recipients or donors. Longitudinal studies are one of the best tools to assess how the type of insurance affects long-term survival rates in LDKT. In this way, it is possible to evaluate whether the type of insurance (e.g., private, Medicaid, Medicare, uninsured) affects long-term graft survival and patient survival after LDKT and how community intervention programs can help ensure the best outcomes for transplantation and improve the quality of life for recipients and their families.

The study points to several avenues for future research: Comprehensive interventions: In addition to insurance types, how might community-based initiatives or targeted outreach improve access to living donor kidney transplants for socioeconomically disadvantaged populations? Investigating pre-transplant pathways: It is critical to analyze the entire pathway from diagnosis of end-stage renal disease to inclusion on the transplant list, a process that can face significant and disproportionate barriers. Long-term outcomes: The impact of insurance type on post-transplant survival and quality of life over time would more accurately reflect the role of insurance in health equity.

POLICY AND PRACTICE IMPLICATIONS

The findings articulated in this letter carry immediate and consequential implications for both health policy and clinical praxis. The persistent disparities observed cast doubt on the sufficiency of market-based solutions alone to address the inequitable distribution of transplant opportunities. In this light, policymakers must re-evaluate the architecture, scope, and equity orientation of public insurance mechanisms. One clear avenue for intervention lies in the expansion of Medicaid in states that have resisted ACA implementation, an act that could begin to dismantle the regional stratification of access to LDKT, which continues to operate along state and socioeconomic fault lines.

Yet the imperative extends beyond policy levers. Clinical infrastructure itself must be reimagined with equity as a design principle rather than a downstream consideration. Resource allocation strategies should prioritize the decentralization of transplant-related services, particularly in historically underserved and geographically isolated areas. This might include the establishment of satellite evaluation centers that reduce travel burdens, the deployment of culturally tailored patient education initiatives, and the embedding of social workers, patient navigators, and transplant coordinators directly into dialysis facilities, sites where disparities are potentially interruptible. In addition, transplant centers and clinical teams must adopt a more anticipatory posture—proactively identifying and supporting potential living donors within structurally marginalized communities, rather than relying on passive referral models that reproduce existing inequities.

Therefore, addressing the social determinants of transplant access is central to realizing a system that is not only clinically effective but ethically defensible[5].

CONCLUSION

The work of Perry et al[1] is a valuable contribution to the literature on health inequalities and transplantation. It challenges the assumption that private insurance alone can provide better outcomes and highlights the need for more nuanced, multidimensional strategies aimed at improving access to life-saving treatments. The findings bring us back to the realization that the pursuit of health equity is not just about changing policy, but also, and just as importantly, about looking more closely at the lived experiences of the populations we seek to serve.