We have a liver selection meeting every Wednesday to consider which patients will get transplants. Each patient is listed by name, age, weight, diagnosis and MELD score, a number based entirely on lab values that predicts how bad their liver is and correlates with how likely they are to die waiting for a transplant. A score of 15 is where we start to consider transplantation, and 40 means a 90-percent chance of dying within three months.
Scanning the list, I noticed with discomfort that the patients at the top, with a MELD of 35 or more, had mostly the same diagnoses: alcoholic liver disease; nonalcoholic steatohepatitis, or NASH, a consequence of obesity leading to fatty liver; and an occasional hepatitis C, a virus that was once the most common indication for liver transplant but now is being cured. This is not surprising. These diagnoses make up greater than 60 percent of the national wait list, and that number continues to grow.
What was making me uncomfortable was that Nate, a medical student on our service, was sitting behind me.
Nate was diagnosed in college with primary sclerosing cholangitis, a rare disease that destroys the liver and leads to irrepressible itching, recurrent infections, possible liver cancer and near-certain death unless a liver transplant is done in time. The problem is, Nate’s MELD score remained in the mid-20s, too low to get a liver.
I work hard not to judge my patients; I don’t know what their lives are like or what stressors they face. I know that alcoholism is a disease. That said, for transplant surgeons such as me, it is hard to watch patients such as Nate—young, motivated, hard-working —suffer. Nate is stuck in MELD purgatory. He’s too sick to live his life, too healthy to get a liver. It is true that Nate has less chance of dying imminently than someone with a higher score. But MELD doesn’t account for age, suffering, hospital admissions, cause of liver failure or potential to overcome that cause after transplant.
And it’s about to get even harder for people such as Nate. In addition to our MELD-based allocation system, livers are allocated based on where the transplant center is to keep travel times for organs short and to incentivize local procurement.
A lawsuit in New York filed last year by six patients awaiting livers in New York, California and Massachusetts argued that the regionalized system is arbitrary and unfair. Patients in these states, the lawsuit stated, “need to wait several years for a transplant, while less-sick candidates 500 or 1,000 miles away will receive transplants in several weeks or months.”
In response to this and another case involving lung transplants, the United Network for Organ Sharing rapidly approved a new system that will allocate livers up to 500 nautical miles from the hospital where a donor died to the patient with the highest MELD score within that distance.
Conceptually, this may sound straightforward. Because jets can fly anywhere, anytime, why not increase the geography of sharing to get a life-saving organ to the sickest patient? Yet these are the likely outcomes of this policy:
More livers will ship to cities with big transplant centers and away from rural, Southern and Midwestern regions.
Centers will be incentivized to list extremely ill high-MELD patients, many of whom will have liver disease from alcohol and NASH.
It will become even harder for people such as Nate to get livers.
We can debate the best distances to share organs among the sickest people, but we should step back and ask why we do transplants. We transplant livers because people have liver disease. Yet the vast majority of liver transplants are for patients who don’t primarily have liver disease, such as sclerosing cholangitis. Instead, we transplant livers for patients who develop cirrhosis from other diseases like alcoholism, hepatitis C and obesity.
Our health-care system loves heroic, innovative treatments such as liver transplants, but not the day-to-day care required to help someone with alcoholism, drug use or obesity. The treatment for alcoholism should focus on prevention and addressing the mental health issues that cause this disease. A transplant should be seen as a failure.
For patients with primary liver disease, the main treatment for their disease is a transplant. Yes, there is danger in selecting patients for transplant based on their disease. And I am happy to transplant a liver into a person with alcoholism who has good social support, insight into their disease and a commitment to change. In truth, some of my greatest victories and most grateful patients carried that diagnosis.
Yet it is hard to imagine that we want most of these precious gifts to go to patients who could have been saved if we had invested in their care earlier. A better strategy would favor transplanting livers into people with primary liver disease, who represent only about 10 percent to 15 percent. The rest could then be allocated based on the MELD system, at whatever distances of sharing we decide on.
At the end of the selection meeting, I asked Nate how he felt about seeing patients move above him on the list. “They deserve transplants more than me,” he said. He knows many of these patients are sicker than he is. He wants them to get better. He told me he always believed, “maybe naively, that if I need a liver, I will get one.” I hope he is right.
Joshua Mezrich is an associate professor of surgery at the University of Wisconsin School of Medicine and Public Health.