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Medical Daily
Medical Daily
Health
Dorothy Brooks

Nearly Half of Americans Referred for a Kidney Transplant Never Begin the Evaluation Process, Study Finds

Nearly half of Americans with kidney failure who are referred for a kidney transplant never take a single step toward the evaluation process, and fewer than one in five ultimately reach the transplant waiting list, according to the largest national study ever conducted on what happens between a transplant referral and a transplant waitlist placement. The findings, from researchers at NYU Langone Health led by Dr. Conor B. Donnelly, analyzed 720,348 patients referred across 110 kidney transplant centers and were published in the Journal of the American Society of Nephrology, with the study presented at the American Transplant Congress in Boston in June 2026.

The numbers are stark: 48% of referred patients never initiated the evaluation process. Only 19% completed evaluation and were placed on the waitlist. And only 10% ultimately received a transplant from this national pool of referred patients.


Why This Matters

Kidney transplantation is the most effective treatment for end-stage kidney disease. Transplant recipients live significantly longer than patients who remain on dialysis, with better quality of life and lower long-term costs to the health system. The median wait time for a transplant varies by blood type and region from 3 to 5 years, but patients first have to get onto the list, and this study documents that the vast majority never do.

"Prior work focused mostly on the waitlist, but that's the end of a long pipeline," Donnelly told Healio. "We know less about what happens earlier, so we wanted to map that whole continuum nationally to see where patients fall out."

What they found is that patients fall out at every step, not just at the waitlist stage, and that structural and demographic factors, not just medical complexity, drive much of the attrition.


What We Know So Far

The study used data from Epic Cosmos, a dataset of more than 300 million electronic health records from 1,850 hospitals, allowing the team to trace a national cohort of 720,348 referred patients across 110 transplant centers from 2014 to 2025. The cohort had a median age of 55 years, was 47% white, 52% male, and 85% living in urban areas.

After referral, the journey broke down as follows: 48% of patients never took the first step of initiating evaluation at a transplant center. Only 52% initiated any evaluation. Of those who began evaluation, only 19% overall completed the full assessment and were placed on the waitlist, meaning a significant proportion who started evaluation also dropped out before completing it. Ultimately, 10% of the originally referred pool received a kidney transplant.

The researchers found a median time of 2 months from referral to evaluation initiation and 4 months from evaluation to waitlisting. These timelines are important because every month on dialysis carries health risks, and each month in a pipeline that most patients never complete represents opportunity lost.


Where the Disparities Are Sharpest

The study found that the likelihood of completing each step of the transplant process was significantly affected by factors that have nothing to do with medical eligibility:

Geographic location: Patients in rural areas were less likely to start or complete a transplant evaluation. Rural patients face longer travel distances to transplant centers, fewer local support resources to help with the logistical demands of evaluation, and primary care and nephrology providers who may be less connected to transplant center workflows.

Transplant center size and region: Patients receiving care at smaller transplant centers or programs located in the Southern United States were less likely to advance through the pipeline. Smaller centers may have fewer navigator resources, less robust processes for following up with referred patients who do not initiate evaluation, and lower transplant volumes that correlate with less developed referral-to-waitlist infrastructure.

Marital status: Unmarried patients were less likely to both begin and complete evaluation. This finding likely reflects the practical reality of transplant evaluation: it requires multiple appointments, often over several weeks, and the logistical and emotional support of a partner or close family member is a significant advantage in completing the process.

Income and language: Patients with lower incomes and Spanish-speaking patients faced even greater challenges. Language barriers in the transplant evaluation process are a documented contributor to health disparities across organ types and have been identified in prior research as a specific intervention target.

Age and obesity: Older adults and patients with severe obesity were less likely to progress, reflecting both medical evaluation complexity and the additional clinical decision-making that can delay or interrupt the evaluation process.


What Doctors and Experts Say

"What our study finds is that the center you go to, the characteristics about where you live and who you are impact whether or not you progress towards transplantation," Donnelly told HCPLive. "Our findings suggest that a substantial proportion of people who need a new kidney fall out of the process long before they ever make the waitlist."

The study's authors called for specific structural interventions: more aggressive follow-up by transplant centers when referred patients do not initiate evaluation, expansion of navigator and case management resources specifically targeting patients at the early referral stage, and attention to the center-level factors that drive disparate attrition rates.


What the Evidence Shows and What It Does Not

MedicalDaily Evidence Check

  • Study type: National retrospective cohort study using electronic health records
  • Published in: Journal of the American Society of Nephrology; doi: 10.1681/ASN.0000001162; presented at American Transplant Congress, June 20, 2026
  • Lead institution: NYU Langone Health; lead author: Conor B. Donnelly, MD
  • Sample: 720,348 adults referred for kidney transplantation, 110 transplant centers, 2014-2025 data (Epic Cosmos)
  • Key findings: 48% never initiated evaluation; 19% reached the waitlist; 10% underwent transplantation
  • Strongest predictors of dropout: Rural residence, smaller or Southern transplant center, unmarried status, older age, severe obesity, lower income, Spanish-speaking
  • What it shows: Massive, multi-level attrition in the kidney transplant pipeline concentrated in structurally disadvantaged patient populations
  • What it does not prove: That the identified factors causally prevent transplantation; the study describes associations, not confirmed causal mechanisms; individual patients may have dropped out for medical reasons not captured in the data
  • Limitation noted by authors: EHR data may not capture all reasons for non-initiation; patients who were appropriately deferred for medical reasons may be classified similarly to those who dropped out due to structural barriers
  • What readers should know: If you or a family member has kidney failure and has received a referral for transplant evaluation, follow up with the transplant center and ask specifically about your evaluation timeline and what steps need to happen next

Who Is Most Affected?

Patients with end-stage kidney disease or advanced chronic kidney disease who are most at risk of being lost from the transplant pipeline before ever being evaluated include:

  • People in rural areas far from transplant centers
  • Unmarried or socially isolated patients without a strong support system
  • People with lower incomes or inadequate insurance coverage
  • Spanish-speaking and other non-English-speaking patients
  • Patients receiving care at smaller transplant programs
  • People in the Southern United States
  • Older adults and people with severe obesity

Black patients were identified in prior research as facing disproportionate barriers to kidney transplant access at multiple stages. The current study did not isolate race as a distinct finding in the summary data available, but the structural factors identified, including Southern regional location and lower socioeconomic status, correlate with higher Black patient proportions in existing nephrology literature.


What You Can Do Now

  • If you or a family member has been referred for kidney transplant evaluation, do not assume the process will happen automatically. Contact the transplant center directly to confirm that your referral was received and ask what the timeline for your evaluation appointment is.
  • If you live in a rural area and have been referred to a transplant center, ask your nephrologist about remote or telemedicine evaluation options, which some transplant centers now offer for portions of the pre-evaluation process.
  • Ask your transplant center specifically whether they have a patient navigator, social worker, or care coordinator who works with patients in the pre-evaluation phase. These resources make a documented difference in completion rates.
  • If you have concerns that your transplant evaluation has stalled and you are not receiving adequate information, contact the National Kidney Foundation at kidney.org or call 1-800-622-9010 for patient advocacy support.
  • If your transplant center is in the Southern United States or appears to be a smaller program, ask your nephrologist whether a referral to a larger program with more established evaluation infrastructure might be appropriate for your situation.

Cost and Access: What Patients Should Know

Kidney transplant evaluation is covered by Medicare (as a kidney disease benefit), Medicaid, and most private insurance plans. Transportation to evaluation appointments is frequently a significant barrier; many state Medicaid programs cover non-emergency medical transportation, and some transplant centers have social work resources to help arrange transportation. Living donor transplantation, which generally has better outcomes than deceased donor, has its own evaluation and navigator resources through programs like the National Living Donor Assistance Center.


What Happens Next

The study has been called on to inform policy changes in transplant center accountability, with researchers recommending that UNOS (the United Network for Organ Sharing) and CMS incorporate pre-waitlist metrics into transplant program performance measurement. Current quality metrics for transplant programs largely focus on waitlist and post-transplant outcomes, missing the pipeline attrition documented here. MedicalDaily will report on any UNOS or CMS policy changes related to transplant access and pre-waitlist accountability.


The Bottom Line

The largest national study of the kidney transplant pipeline found that 48% of referred patients never begin the evaluation process and only 19% reach the transplant waitlist. The losses are not random: rural patients, patients at smaller programs, unmarried individuals, lower-income patients, and Spanish-speaking patients are systematically more likely to fall out of the pipeline. A kidney transplant referral is not a guarantee of evaluation. Patients and their advocates must actively follow up, ask questions, and seek support to navigate a system that loses nearly half its patients before evaluation even begins.

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