Friends of the National Liver Waiting List Foundation Friends of the National Liver Waiting List Foundation is a patient-and-caregiver-facing organization that helps families understand and navigate liver transplant access in the United States. We focus on clear, practical guidance about how the UNOS/OPTN system works, what options patients are allowed to pursue, and how families can advocate effectively without unnecessary confusion or conflict.
More than 9,000 adults in the United States were on the liver transplant waiting list at the end of 2022, the most recent year of complete OPTN/SRTR data. Roughly 12 percent of patients on the list each year die or are removed because they have become too sick to transplant. A major reason is that many very sick patients do not appear “sick enough” under a single scoring system, leaving them on the list for long periods with little progress.
That score is MELD, the Model for End-Stage Liver Disease. MELD is used to estimate short-term mortality risk and help determine transplant priority within the OPTN framework. It is an important tool. It does not always capture the full reality of liver failure.
The research on this is clear. One frequently cited study of waitlist mortality found that 70 percent of waiting list deaths occurred in patients who had been listed with MELD scores below 20. Patients in this group are often described in the medical literature as “underserved by their MELD score over time,” meaning the number on the chart does not reflect how sick they actually are. They face severe symptoms, serious complications, and rapidly worsening quality of life. In some cases, they may be as sick, or functionally sicker, than patients with higher MELD scores, even though the number does not fully reflect their risk, suffering, or urgency. Patients in this position can end up officially listed but waiting without progress. There are things that can be done about that, and that is why the Foundation exists.
Transplant centers are not all the same. They differ in evaluation practices, clinical judgment, donor access, technology, and how they approach patients whose MELD scores do not tell the whole story. The median MELD at transplant, called MMaT, varies significantly across the country. A center in one part of the country may transplant patients at a median MELD in the low 20s. A center in another part may not transplant most patients until their MELD is in the mid-30s. Some centers transplant lower-MELD patients more often because they have access to a wider pool of donor organs, use perfusion technology to extend the reach of marginal organs, or have clinical teams who are more willing to consider extended-criteria and DCD donors.
Our work helps patients and caregivers understand those differences and act on them. We provide structured information to support second evaluations, better questions, and, when appropriate, multi-center listing, sometimes called dual listing. Being listed at more than one center can expand access, reduce dependence on a single program’s internal thresholds, and improve the chances of receiving a timely transplant.
The Foundation does not provide medical advice, diagnoses, or treatment direction. We provide education, navigation support, and caregiver-focused tools that help families manage an overwhelming system with greater clarity. Our goal is simple. Help patients pursue informed options that may meaningfully improve survival.
SOURCES
Kwong, Allison J., et al. “OPTN/SRTR 2022 Annual Data Report: Liver.” American Journal of Transplantation 24, no. 2S1 (February 2024): S176–S265. https://doi.org/10.1016/j.ajt.2024.01.014.
Atiemo, Kofi, et al. “Hypoalbuminemia at Listing Predicts Late Mortality on the Liver Transplant Waiting List.” Liver Transplantation, July 2014. https://pubmed.ncbi.nlm.nih.gov/25050469/.
Kamath, Patrick S., et al. “A Model to Predict Survival in Patients with End-Stage Liver Disease.” Hepatology 33, no. 2 (February 2001): 464–470.
Organ Procurement and Transplantation Network. “Median MELD at Transplant Around the Donor Hospital: Two-Year Monitoring Report.” OPTN Liver and Intestinal Transplantation Committee, February 2025.
Organ Procurement and Transplantation Network. “Policy 3.4: Multiple Transplant Program Registrations.” OPTN Policies. Accessed May 2026. https://optn.transplant.hrsa.gov/policies-bylaws/policies/.
Data and policy text current as of: May 2026. Waiting list and mortality figures are based on OPTN/SRTR 2022 reporting, the most recent complete annual data available at publication time.
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