By Hendra Lukman 
A groundbreaking nationwide study has unveiled a sobering reality for individuals suffering from kidney failure: a staggering proportion of those referred for a life-saving kidney transplant never even initiate the comprehensive evaluation process necessary to be considered for a donor organ. The research, conducted by a team at NYU Langone Health and published in the Journal of the American Society of Nephrology, reveals that a significant 48% of referred patients abandon the process before it truly begins. Even more concerning, a mere 19% successfully navigate the entire evaluation and secure a coveted spot on the national transplant waitlist. This stark attrition rate raises critical questions about the accessibility and equity of the kidney transplant pathway in the United States.
The study, which analyzed data from an unprecedented 720,348 patients referred for kidney transplantation between 2014 and 2025, provides the most detailed examination to date of why so many potential recipients fall out of the system. While considerable attention has been paid to the challenges faced by patients once they are on the waitlist, this research shines a crucial spotlight on the critical pre-waitlist phase, an area previously shrouded in less clarity.
Identifying the Bottlenecks: Who is Left Behind?
The NYU Langone Health study meticulously dissected the factors influencing a patient’s progression through the transplant journey, revealing significant disparities that disproportionately affect vulnerable populations. The findings indicate that individuals who are unmarried, have severe obesity, or reside in rural communities are less likely to begin or complete the necessary transplant evaluation.
The barriers become even more pronounced for older adults, Spanish speakers, and individuals with lower socioeconomic status. These groups face compounded challenges in navigating the intricate and often demanding evaluation process. Furthermore, the study highlighted geographical and institutional factors, noting that patients receiving care at smaller transplant centers or those located in the Southern United States were also less likely to advance.
"Our findings suggest that a substantial proportion of people who need a new kidney fall out of the process long before they reach the waitlist, let alone make it to the operating room," stated Conor Donnelly, MD, the study’s lead author and a resident and PhD student in the Department of Surgery at NYU Grossman School of Medicine. "Which transplant center you go to, where you live, and even whether you are married all appear to influence your chances of moving forward to the waitlist for a new kidney."
The Labyrinthine Evaluation Process
The complexity of the transplant evaluation process itself is identified as a primary driver of these attrition rates. Following a referral, patients are required to undergo an exhaustive medical assessment designed to determine their overall suitability for a transplant. This rigorous process typically involves a battery of blood tests, chest imaging, comprehensive cancer screenings, and a host of other examinations. The evaluations often necessitate multiple appointments spread over several months, all while patients are simultaneously managing their ongoing dialysis treatments.
Only after successfully completing these demanding requirements and receiving formal approval from the transplant team can a patient be officially placed on the transplant waitlist.
The researchers also pointed to potential resource limitations at smaller transplant centers. These centers may have fewer available transplant opportunities, leading them to adopt a more selective approach in evaluating candidates. Additionally, the study suggests that patients who are unmarried or lack robust social support networks may struggle more with the logistical demands of the evaluation process, such as arranging transportation for repeated appointments and securing assistance with pre- and post-appointment care. This could partly explain why patients in urban areas, where transplant centers are generally more concentrated and accessible, demonstrated a higher likelihood of progressing through the evaluation stages.
A Comprehensive Look at Pre-Waitlist Dropouts
This research represents the most extensive and in-depth examination to date of the reasons behind patients discontinuing their pursuit of a kidney transplant before reaching the waitlist. The findings were published online on June 20 in the Journal of the American Society of Nephrology and were also presented at the prestigious American Transplant Congress, the annual gathering of the American Society of Transplantation and the American Society of Transplant Surgeons.
To conduct this comprehensive analysis, the research team leveraged Epic Cosmos, a vast database encompassing over 300 million electronic health records from more than 1,850 hospitals across the United States. This dataset includes records from over one-third of all US transplant centers, providing an unparalleled scope for the study. The researchers meticulously tracked adults who were referred for kidney transplantation between 2014 and 2025, monitoring their progress through four distinct stages: referral, evaluation, waitlist placement, and ultimately, transplant.
Social Determinants of Health and Transplant Access
Through sophisticated statistical modeling, the researchers delved into how various factors, including age, sex, medical history, and geographic location, influenced a patient’s probability of advancing from one stage to the next. A particularly significant aspect of their investigation was the analysis of social vulnerability. This concept encapsulates the challenges individuals face due to their living conditions and access to essential services, such as poverty, unstable housing, and limited transportation options. These social determinants of health can significantly impede a person’s ability to navigate complex medical systems.
"These results demonstrate that finding ways to reduce barriers to both evaluation and waitlisting could help expand much-needed access to kidney transplantation," emphasized study co-senior author Allan B. Massie, PhD, an associate professor in the Departments of Surgery and Population Health at NYU Grossman School of Medicine. "Providing patients with better education and support to help them navigate the complex and sometimes grueling process would be a good start."
Echoing this sentiment, study co-senior author Michal A. Mankowski, PhD, an assistant professor in the Department of Surgery at NYU Grossman School of Medicine, stated, "Our findings highlight the need to better support patients in progressing from referral to the waitlist, where many possibly eligible individuals are not ultimately listed." Dr. Mankowski indicated that future research will employ a similar methodology to investigate other types of organ transplantation, acknowledging that the pathways to waitlisting can vary considerably across different organ systems.
Implications for Policy and Patient Care
The implications of this study are far-reaching, suggesting a critical need for systemic changes to improve equity and access to kidney transplantation. The significant number of patients who do not even begin the evaluation process underscores a failure in the initial stages of care and referral. This points to a potential lack of adequate patient education, insufficient support systems for navigating complex healthcare bureaucracies, and possibly disparities in how patients are informed about the transplant option and its requirements.
The identified disparities based on marital status, socioeconomic status, race/ethnicity, and geographic location highlight the impact of social determinants of health on transplant access. Addressing these disparities will require a multi-faceted approach that extends beyond the transplant centers themselves. It may involve collaborations with community organizations, enhanced primary care physician education on transplant referral criteria, and the development of culturally sensitive patient support programs.
Furthermore, the finding that smaller transplant centers or those in specific regions may have lower progression rates warrants further investigation. This could involve exploring resource allocation, transplant center protocols, and the availability of transplant coordinators and support staff. Policies aimed at standardizing evaluation processes, ensuring adequate staffing at all centers, and providing financial and logistical support for patients during the evaluation phase could significantly improve outcomes.
The study’s authors suggest that improving patient education and providing dedicated support navigators could be crucial first steps. These navigators could help patients understand the evaluation process, manage appointments, and overcome logistical hurdles. Additionally, exploring telehealth options for certain aspects of the evaluation, where feasible, could alleviate some of the burden on patients, particularly those living in rural areas.
The research also implicitly calls for a re-evaluation of how transplant centers are funded and resourced. If smaller centers are less equipped to handle the evaluation process efficiently, targeted investment or collaborative models might be necessary. The long-term goal must be to ensure that a patient’s ability to receive a life-saving transplant is not determined by factors outside of their medical need.
The sheer scale of the study, encompassing hundreds of thousands of patients over more than a decade, lends considerable weight to its conclusions. It provides a robust foundation for policymakers, healthcare providers, and patient advocacy groups to collaborate on solutions that will dismantle the barriers preventing eligible individuals from accessing kidney transplantation. The ultimate aim is to ensure that every patient with kidney failure who could benefit from a transplant has a fair and equitable opportunity to be considered.
The NYU Langone Health team, in collaboration with researchers from Indiana University and University Hospitals, has provided a critical roadmap for improving the kidney transplant system. Their work not only illuminates the extent of the problem but also offers actionable insights into how the system can be reformed to serve more patients effectively. The journey from referral to transplant is fraught with challenges, and this study underscores the urgent need to smooth that path for all.
