In fall 2021, Charlie Scott was in despair. He’d dropped into full-on liver failure that summer and learned from hepatologists near his central Pennsylvania home that a transplant was likely his only long-term hope. He was just 48 years old.

After finding his way to Johns Hopkins, he hit it off immediately with Surgeon-in-Chief Andrew Cameron, who directs the Liver Transplant Program. “The first thing we did was get into football, my Eagles and his Ravens,” Scott recalls with a laugh.

Laughter was a rare commodity in Scott’s life at this point. The one-two punch of indescribable pain and debilitating exhaustion dominated his days. He threw up everything he tried to eat. The weight loss was turning him into a sagging shadow of his former power-lifter self.

Cameron sent Scott off for a gauntlet of tests, scans and interviews required of patients hoping to snag a spot on the liver transplant list at Johns Hopkins. With about 400 names at any given time, that list puts Johns Hopkins among the nation’s 10 biggest liver transplant programs.

But everything went haywire when Scott’s PEth results came back. That blood test looks for phosphatidyethanol, a biomarker that forms when red blood cells interact with alcohol. Scott flunked on that front. Upon hearing the news, he and his wife, Paige, figured it meant he’d be rejected for a transplant.

“I was heartbroken,” he says.

Hiding Behind the Six-Month Rule

Since its earliest days, liver transplantation has been defined by a deadly numbers game. Today, roughly 20,000 of the 500,000 Americans with cirrhosis are in such bad shape that a transplant is their only real long-term hope. But annual liver donations from donors who died have never topped 10,000.

On average, 1,700 Americans die every year while waiting for a new liver.

Alcohol use has long been a red flag when it comes to prioritizing liver transplants — for obvious reasons. One-third of cirrhosis cases that end in liver failure can be tied to alcohol use and abuse. It’s involved in half the cases of patients who end up on transplant lists. 

The story of Scott’s case dates back to 2013, when he was diagnosed with metabolic dysfunction-associated steatohepatitis (MASH), though back then it was called nonalcoholic steatohepatitis (NASH). This brand of liver disease is caused by fat buildup that leads to damaging inflammation. He showed no signs of cirrhosis at that point. NASH patients are advised to abstain from alcohol, which Scott did for the next eight-plus years.

In a cruel turn, Scott’s liver crisis began in the aftermath of one of the happiest days of his life, when he and Paige married in May 2021. This second marriage seemed to him an occasion so special that it justified taking a gamble with celebratory libations.

He lost that bet. The drinking he did in the weeks around the wedding exacerbated his MASH, leading to a run of problems that included ascites, jaundice, encephalopathy and gastric varices. When those issues proved unresponsive to treatment, a transplant became his only option.

At Johns Hopkins and around the country, the numbers game is an excruciating affair for the surgeons, hepatologists, nurses, social workers and other clinicians who must choose winners and losers on the liver transplant list.

An obvious question arises when a patient tests positive in an alcohol screening: Should a precious donated liver be given to someone liable to keep drinking?

No laws or regulations govern this question. An informal best practice known as the “six-month rule” took shape as the field grew into maturity in the 1980s and 1990s. Patients had to be alcohol-free for six months to qualify for a spot on the transplant list.

Some patients who fail their initial alcohol screening survive beyond six months, long enough to try and get on the list again. But a good number die during that window. While rooted in common sense and motivated by good intentions, the rule was never subjected to the rigors of research.

Into that breach stepped Cameron, transplant hepatologist Po-Hung “Victor” Chen and others at Johns Hopkins. The team has become a national leader in offering early liver transplants, waiving the six-month abstinence requirement for some patients with alcohol-associated liver disease. They’ve found that so far, that six-month rule is failing this rigors-of-research test.

Chen suspects one reason the rule has endured for so long in the absence of evidence is the way it can ease the agony of making life-or-death calls.

“Having a rule like six months can make those really difficult decisions a little easier — you get to kind of hide behind it,” Chen says. “If it’s not there, then you have to look at things in a much more nuanced way, on a case-by-case basis, where things aren’t so black-and-white anymore.”

Cameron’s thinking about the rule began to shift around 2011, when transplant teams in France reported in The New England Journal of Medicine that they had experimented successfully with giving transplants to a small number of nonabstinent patients.

Not long after, Cameron says, a patient arrived at Johns Hopkins in desperate straits — “yellow as a school bus” and on the verge of death from severe alcohol-associated hepatitis (SAH). Like many SAH patients, he couldn’t speak for himself, but his family reacted with outrage when told of the six-month rule.

“What do you mean you could save him, but you’re not going to?” Cameron recalls them saying. “How could we be in violation of some rule no one ever explained to us?” Those family members vowed to stand by their loved one every day going forward. They vowed to Cameron that “this will never happen again.”

“Something in their words just sort of rang true with our team,” Cameron says. “Their passion was so compelling. We took a chance.”

 The success of that surgery set the liver transplant team at Johns Hopkins on a path to becoming the leading U.S. center to put the six-month rule to the test. Over the last decade, Johns Hopkins surgeons have completed 150 transplants for patients with alcohol-free periods shorter than six months. Their papers published in Annals of Surgery and JAMA Surgery detail the results — a one-year survival rate of 94%, which is right in line with the general liver-transplant patient population, as are relapse-to-alcohol rates with those of patients held to the six-month standard, roughly one in five one year after a transplant.

Charlie Scott’s liver crisis began in the aftermath of one of the happiest days of his life: his marriage to Paige, in May 2021. Moments by Amy Photography

‘Not Yet’

When Charlie and Paige trudged into Cameron’s office after that failed alcohol test result, they expected a farewell session. Instead, Cameron explained the new rules at Johns Hopkins. In this case, “no” didn’t really mean “no.” It was more like “not yet.” Instead of punishing patients for past alcohol use, Cameron explained, the focus is on gauging prospects for future success.

“He told us that it’s now a matter of figuring out whether you’re ready to go where the doctors need you to go,” Scott says. “He wanted us to prove a few things.”

The liver transplant team tailors the next steps to the individualized situation of each patient who doesn’t hit the six-month standard. Scott signed up for a residential addiction rehab program, paying out of pocket. He endured a regimen of daily breathalyzers. He hit other benchmarks that spoke to the level of commitment he and Paige had — taking meds religiously and showing up to appointments. In interview sessions, Johns Hopkins social workers measured his level of “insight” on alcohol issues. The transplant team also asked for information about his social support network, a critical factor in post-transplant survival.

Chen was a fellow at Johns Hopkins during the early days of accepting patients with positive alcohol tests. Today, as an assistant professor, he specializes in that selection process, researching issues around addiction and recovery, motivational intervention strategies, cognitive behavioral therapy and pharmacotherapy.

Chen cites one survey that says 70% of U.S. liver transplant centers are now at least willing to consider following Johns Hopkins’ lead by accepting patients who don’t hit that six-month bar. The transition remains a work in progress, however, with many programs still accepting just a handful of patients while working out the details of a more nuanced selection process. These patients often require extra care. Many need post-transplant medications for alcohol abuse disorder. Others need extra social work and counseling help, which may not be available in smaller institutions.

“Drawing a firm line in the sand on these questions is often problematic,” Chen says. Consider, he suggests, just one of the various scenarios where complexities abound — the conventional wisdom about excluding patients who relapsed after going through rehab.

How can that be fair, Chen asks, when a wealth of addiction research indicates that lapses are to be expected on the way to long-term success? A sharper question: Which lapses point to likely long-term failure, and which represent essential steps toward sobriety? He fires off more questions. Did the patient volunteer for rehab, indicating a recognition that they need help? Or was it a court-ordered affair? Since the quality of rehab programs varies greatly, can some relapses be chalked up to bad programs? What if the style of rehab was a bad fit?

Other aspects of the selection process are full of gray areas too. While a patient’s level of “insight” into his or her alcohol issues is critical, the survey instruments used to measure that are less than perfect. Gauging the strength of a patient’s support network can be dicey as well, though that network is often critical to long-term success.

Johns Hopkins nurse practitioner Lauren Boyer says transplant recipients will need help with the tasks of daily living for three to six months after they receive their new liver. Out-of-town patients like Scott are warned that they and a caregiver will need to move to Baltimore for at least six months, perhaps a full year.

“We always talk in medicine about how our patient selection methods should be ‘reproducible’ and ‘transparent,’’’ Chen says, but the six-month rule is a cautionary tale. “It’s both reproducible and transparent, yet it is also scientifically and ethically flawed.”

Through efforts led by Andrew Cameron, right, and Po-Hung “Victor” Chen, the liver transplant team at Johns Hopkins has become a national leader in putting the six-month abstinence rule to the test.

Making a Match

By early 2022, Scott had turned “not yet” into “yes.” He was on the transplant list at Johns Hopkins — and yet, hope once again turned to despair: His MELD score (or Model for End-Stage Liver Disease, a key metric used to prioritize transplant cases) had dropped during the interval, meaning he was nowhere near the top of the transplant list.

Scott’s best bet now, Cameron advised, was to try and find a living donor — someone with the same blood type, of course, but also in good health and with a similarly sized liver and a series of compatible genetic qualities. That person also had to be willing to endure major surgery and a lengthy recovery, with real risks that something could go awry.

Upon hearing this, Scott recalls thinking, “Who in their right mind would do that?”

Donations from living donors are rare compared with cadaveric donations, accounting nationally for less than 10% of transplants. While almost all living donations come from friends and loved ones, most who apply to be a donor do not turn out to be a match.

Those who do need to decide how much risk they’ll take on. Giving up a small piece of liver that might help a sick child carries a chance of death of perhaps one in 10,000, Cameron says. The fatality rate in donating the much bigger chunk of liver that an adult needs varies according to the donor’s health status. Cameron puts the range between one in 200 to 1,000.

At Johns Hopkins, the number of living-donor liver transplants is more than double the national average, with living donors accounting for 25 to 30 of the 130 transplants performed annually. One reason? An innovation called the DONOR app, which encourages patients to use social media to spread word of their need for a donor.

Scott was initially skeptical. “It’s like they were telling me I had to open an online lemonade stand to get a liver,” he recalls. But Paige was ahead of the game. She’d been chronicling her husband’s journey through his health crisis on social media. She soon jumped on DONOR too. The inspirational tagline she adopted was “Champions for Charlie.”

Back in the Game

Days turned into weeks, then months. By spring 2022, Scott was losing hope. His levels of pain and exhaustion kept rising. “Oh my God, I wouldn’t wish it on anybody,” he says.

Scott found himself looking back on his life with satisfaction. He’d seen, done and experienced more than many others. He’d been an athlete and a Navy medic. He’d fathered two wonderful kids. He’d thrived in a biotech career. He’d traveled to multiple continents.

“If I were breathing my last today,” he recalls thinking, “sure, I’d have regrets. But I’ve had a pretty darn good life.”

Still, he wanted to hang on a little longer. Those two kids — twins, a boy and a girl, from his first marriage — were about to graduate from high school. He wanted to watch them walk across the stage, to feel the pride that wells up in a father’s heart on such occasions.

Unbeknown to Scott, someone else was eyeing those same graduation dates. Brian Manson works with Scott in a biomarker production facility in Malvern, Pennsylvania. Scott had hired Manson, then mentored him and shepherded him through various promotions.

“Charlie is responsible for bringing a lot of people into the company and then helping them get into positions where they succeed,” says Manson.

To Manson, Scott personified qualities he had cherished since his childhood days in the Boy Scouts: courteous, kind, cheerful, thrifty and brave. Scott did all manner of “good turns” for co-workers. Manson, who had been following his friend’s journey on social media and in person at the office, found it hard to watch such a man fall into a downward spiral.

He called the transplant team at Johns Hopkins around the time Paige began spreading the word that a living donor might be Charlie’s only hope.

“Who would I be if I were to let this man fall into this state of helplessness without at least putting my best foot forward?” Manson says. He, too, ran through a gauntlet of scans, test and interviews. Then it started looking like he might pass the test. Manson is athletic, healthy and young, age 41 at the time. Johns Hopkins doctors put his odds of dying in surgery at the low end: one in 1,000.

And so came the day when Manson walked into Scott’s office, waving a piece of paper. “I just got an email. It says I just got approved to be your donor.”

Scott had no idea he had applied. In the minutes that followed, he ended up on his hands and knees on the floor, crying so loudly that folks ran in from other offices to see if everything was okay. “I can’t believe you’re willing to do this,” he said.

Manson’s reply: “Let’s get you back in the game.”

Living ‘a Miracle’

Charlie Scott’s transplant day was Aug. 2, 2022. It would have been nice if that date marked the start of Scott’s new life, but his recovery was full of ups and downs. Complications caused by scarring buildup from a 10-year-old gallbladder operation led to an emergency repair job. He was in the hospital for most of another month as Johns Hopkins hepatologists found the right mix of immunosuppressants.

For Charlie and Paige, life finally started returning to a measure of normal in spring 2024. He and Paige took their first trip together, down to Florida. They’ve just started planning a trip to Europe. They’re working on getting their boat back in the water for the first time in years.

“I didn’t think it was ever going to come, but life is returning to normal,” he says, “and I’m in a totally different place now. I look at my kids differently. I smell the grass differently. I notice the sun differently. It’s really a miracle. My job now is to make sure I don't disappoint any of those people who helped me. I was given a second chance when so many other people die waiting for a new liver.”