Outreach

Why you're seeing this

This is information many patients and caregivers say they were never clearly given. Liver transplant programs operate differently.

Friends of the National Liver Waiting List is a charitable outreach group dedicated to helping liver patients and their caregivers understand—and navigate—the realities of transplant access in the United States. We focus on practical, plain-language guidance around the UNOS/OPTN transplant system: how waitlists function, what options patients are allowed to pursue, and how families can advocate effectively without unnecessary conflict or confusion.

Today, roughly 12,000 people in the U.S. are waiting for a liver transplant. Each year, about 2,000 people die while still on the waiting list. Behind these numbers is a recurring problem: many patients who are seriously ill do not appear “sick enough” under a single scoring number, and as a result they can remain listed for long periods with little forward movement.

That scoring number is MELD (Model for End-Stage Liver Disease). MELD is a standardized score used to estimate short-term mortality risk and to guide transplant prioritization. The broader national transplant policy environment is managed under OPTN (the Organ Procurement and Transplantation Network), which oversees the rules and framework under which UNOS operates. MELD is an important tool—but it is not a complete description of the lived reality of liver failure.

Many patients with a MELD of 15 or lower experience severe symptoms, dangerous complications, and rapidly deteriorating quality of life. In some cases, they may be as sick—or functionally sicker—than patients with higher MELD scores, even though the score does not fully capture their clinical risk, suffering, or urgency. This gap can leave low-MELD patients in a kind of limbo: technically “listed,” but practically stuck.

Not all transplant centers operate the same way. Programs differ in evaluation workflows, clinical judgment, technology adoption, donor availability, and how they approach candidates whose MELD scores do not reflect the full severity of their condition. Some centers transplant lower-MELD patients more frequently, often because their systems, procedures, and tools allow them to manage organs and recipients with greater flexibility and efficiency.

Our core use cases are designed to help patients and caregivers identify these differences and act on them. We provide structured information that supports second evaluations, informed questions, and—when appropriate—multi-center listing (“dual listing”), meaning being listed at more than one transplant center. Dual listing can expand access, reduce dependence on a single program’s internal thresholds, and increase the probability of receiving a timely transplant.

Friends of the National Liver Waiting List does not provide medical advice, diagnose conditions, or direct treatment decisions. Instead, we focus on education, rights-aware navigation, and caregiver-supportive tools that reduce the experience of being overwhelmed by the almost un-manageability of it all. The goal is simple: give patients and families the clarity and confidence to pursue lawful options that may materially improve survival.

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What we provide

This service can send practical, plain-language help:

• A plain-language list of transplant centers with shorter wait times
• A simple checklist for requesting a second evaluation
• Patient and caregiver rights under UNOS/Medicare (informational)
• Non-medical navigation help (documents, questions, next steps)

We do not:

• Give medical advice
• Recommend one center over another
• Pressure anyone to leave their current care team

Sources

• SRTR Transplant Center Data
• organdonor.gov statistics
• Intermountain Health (median 22 days)
• FDA: OrganOx metra IFU (up to 24 hours)