When Steve Jobs needed a liver transplant in 2009, he went to Tennessee, where the wait time for a donated organ is significantly shorter than in states like California, Massachusetts, Texas, and New York.
He didn’t break any rules; he just took advantage of an antiquated system that distributes organs along arbitrary regional lines that were developed more than 30 years ago.
As a result, where patients live has a disproportionate effect on their opportunity to receive an organ, and consequently, on their risk of dying while on the waiting list.
The harsh reality is that, wherever you live, there aren’t enough organs to accommodate those in need. Nationally, about 8% of patients die while waiting for a liver; in New York, that rate is nearly double.
In any given year, about 6,000 livers from deceased donors are available for transplantation nationwide. (In the case of liver transplant, it is also possible to take part of a living donor’s organ, but this option is underutilized — only 359 living-donor transplants were done in 2015.)
Because more than 24,000 Americans are waiting for a liver transplant, that leaves about 18,000 people on the waiting list for a donor organ — and roughly one in 10 of those patients lives in New York State. Many of us in the transplant community are working to come up with a more equitable system.
The liver is a critical organ, responsible for hundreds of functions, many of them related to digestion and metabolism. One of the liver’s most remarkable features is that it can fix itself and actually regenerate.
However, that self-healing ability isn’t infinite. With continuous damage, the liver starts to form scar tissue which eventually leads to cirrhosis and end-stage liver disease. These are the main indications for liver transplantation.
What causes liver damage in the first place? Many of the causes fall into broad categories, including viral hepatitis; drug-induced liver injury; or cholestatic diseases.
Fatty liver disease and alcohol use are also major causes of liver damage, and both are on the rise. Liver cancer that is unresectable — too extensive to be removed surgically — is also a major indication for transplantation.
Patients in need of liver transplantation are often quite ill. They can appear yellow, with jaundice, and they can also have dramatic abdominal fluid retention, gastrointestinal bleeding, and encephalopathy, a condition marked by confusion and forgetfulness.
Liver transplantation has achieved very good outcomes. At Mount Sinai, almost 90% of transplant patients are alive at the one-year mark, and 75% reach the three-year mark. These are patients who were so sick that they had almost no chance of surviving a year without receiving a new liver.
Most liver transplant patients stay in the hospital for seven to 10 days, and within six weeks, they are back to doing what they want — quite literally. After transplant, people have even played professional sports or competed in the Olympics. Getting a new liver can restore patients to an active and productive life. But the question remains: How do you decide who gets these scarce, life-saving resources?
Following instructions from Congress, the Institute of Medicine studied the question of organ allocation and determined that for livers, the sickest patients should have more priority.
As a result, researchers developed a disease-severity score known as the Model for End-Stage Liver Disease (MELD), which is calculated from three lab tests, including bilirubin, clotting time (called INR), and creatinine.
A healthy person might have a MELD score of about 6, but someone in need of a liver transplant should have a score above 15. While a New Yorker might need a MELD score of 35 to 40 in order to get a transplant, that same person, if she lived in other parts of the country, might be able to get a transplant with a MELD score of 25 or even lower.
In part, this is because liver diseases are more prevalent in urban areas. Moreover, some states have higher rates of strokes and preventable deaths, the causes of death that provide most donor organs. In addition, some areas of the country have improved their donation rates, while other areas have made less progress.
Clinicians and public policy experts generally agree that socioeconomic status, race, gender, and where you live should not determine your access to transplant. But as an unintended consequence of the current system, where you live is one of the biggest factors in how long you wait for a transplant — or if you ever get one.
This is now recognized as an inequity by the United Network for Organ Sharing (UNOS) and the Health Resources and Services Administration, the federal agency in charge of overseeing organ donation and transplantation.
While the geographic inequity is clear, a solution remains elusive. Several models for distributing organs are now being considered. Because the current system was designed for purely administrative purposes, not equitable liver distribution, it has been outperformed by nearly every model that has been tested.
Central to the debate is whether a donated liver is considered a local or national resource. When polled, donor families routinely state that they want their loved one’s liver to go to the person most in need. In my mind, donated organs should be a national resource. Having the means to travel to another state should not determine a patient’s life or death.
To become more informed about liver disease and transplantation, check the web sites of UNOS (www.unos.org), the American Liver Foundation (liverfoundation.org), and the Mount Sinai Health System (mountsinai.org/patient-care/service-areas/organ-transplants).
Living with liver disease is not easy, but transplantation is all about hope and the possibility of recapturing health and quality of life. Thanks to donors, thousands of transplant patients are enjoying life — and that is incredibly inspiring.
Sander S. Florman, MD, is Director of the Recanati/Miller Transplantation Institute.
Charles Miller, MD, is Professor of Surgery at The Mount Sinai Hospital.
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