GRAND RAPIDS, Mich. (WOOD) — More young adults are facing death from alcohol-induced liver disease, particularly in the year since COVID-19 arrived in the United States.
For some patients, transplants are their only hope for survival. But historically, the health care industry has denied liver transplants to potential recipients who have been sober less than six months. That’s a death sentence for patients who may have just weeks to live.
A West Michigan woman reached out to Target 8 when her ex-boyfriend needed a lifesaving liver transplant as a result of to his struggle with alcoholism.
“The father of my children has been sent home to die by multiple hospitals even though he has a willing live liver donor,” Arrika Orchana wrote in a Facebook message to Target 8 investigators. “The issue is he was an alcoholic for years. He’s not asking to be on a transplant list and would not be taking a liver that could be given to someone else the hospital deems more ‘deserving,’ but from his sister who volunteered immediately for him. The medical community recognizes alcoholism as a disease yet is able to discriminate against it. Why?”
The family of Ian Duff, 37, of Grand Rapids, was frantically searching for a transplant program willing to give the father of two a second chance to see his children grow up.
Nationwide, alcohol-associated liver failure is killing younger and younger people, particularly women in their 20s and 30s whose bodies metabolize alcohol differently than men.
Excessive alcohol use can cause inflammation and scarring of the liver, impeding vital functions like waste removal, digestion of fats, and filtering of chemicals from food and alcohol.
Diseases caused by alcohol, like fatty liver, alcohol-induced hepatitis and cirrhosis, were increasing even before 2020. In the last two decades, alcohol-associated liver deaths in the United States have doubled to around 24,000 per year, with the biggest relative jump happening among 25- to 34-year-olds.
With Michiganders drinking more amid the stress and isolation of the COVID-19 pandemic, the University of Michigan Medical Center reports that early estimates show a 30 to 50 percent jump in hospital admissions for alcohol-related liver disease.
MOM: ‘IT’S REALLY HARD TO WATCH HIM DIE LIKE THIS’
“(Ian’s) smart. He’s funny. He’s a contributing member of society,” Kim Gerstenberger said of her son, Ian Duff. “He’s 37. He’s got two little kids. He’s a good father. …They love him. He loves them. I want him to be there for his kids.”
Gerstenberger knew her son drank too much but not that he was up to a fifth of whiskey or vodka a day.
“With COVID, I think he just drank a lot more,” said his mom, who noted that Duff had a good job before the pandemic.
While he always liked beer, Gerstenberger said her son’s drinking accelerated after his older brother died by suicide in 2007.
In mid- to late 2020, Duff began losing weight and had flu-like symptoms and yellowing skin, all signs of liver failure. In December, he was diagnosed with alcohol-induced liver failure at Spectrum Health.
When it became clear he would need a liver transplant to live, his sister immediately stepped up to donate a portion of her liver.
“I thought, well, if he’s a viable candidate and she is, do it,” Gerstenberger recalled. “But they won’t.”
Michigan is home to three liver transplant centers: the University of Michigan Medical Center, Henry Ford Health System and Beaumont Health. While Spectrum Health doesn’t do liver transplants itself, Gerstenberger said doctors there did not refer Duff to any facilities that do.
“Since he was an alcoholic and hadn’t been sober for six months, he was disqualified,” Gerstenberger said. “It’s really hard to watch him die like this.”
Spectrum Health declined to comment on the care it provided Duff, but sent Target 8 a statement saying it is “committed to providing high quality care to every to patient.”
“We express our condolences to the family and friends of Ian Duff. It is not our practice to discuss individual patient issues such as this,” the statement read in part.
Duff ultimately made trips to both Cleveland Clinic and the University of Michigan Medical Center, but neither approved a liver transplant.
Two days after he arrived at the Ann Arbor hospital, Duff died there in a palliative care suite with his mom at his bedside.
Gerstenberger said doctors told her that Duff’s heart was too weak to withstand the stress of a transplant.
“It’s hard because I keep thinking, if only I’d gotten him to University of Michigan earlier,” she said. “I don’t think it had to be this way… He was strong. I think he could have survived a transplant if we’d gotten there early enough.”
It had taken Duff’s family 12 days of phone calls to find a transplant program — the University of Michigan — that might be willing to waive the six-month sobriety standard.
“That’s why things have to change,” Gerstenberger said. “Because the way the system is set up, you can’t navigate it without the hospitals involved.”
It’s difficult to determine the number of patients who die after being denied transplants due to active alcoholism.
However, there’s a network of people who are working to abolish the six-month sobriety requirement.
Among them are the parents of several young women who faced the same fate Duff did.
Brianna Robinson, 25, was diagnosed with alcoholic liver failure in late 2019 at Detroit’s Henry Ford Hospital.
DOCTOR: SIX MONTHS SOBRIETY ‘ARBITRARY’
Several health care institutions told Target 8 that standards regarding who should be considered for liver transplants are evolving swiftly.
“The six-month rule goes back to ’90s,” Dr. Elliott Tapper of the University of Michigan Medical Center said in a Zoom interview with Target 8.
Tapper was not involved in Duff’s care and had no knowledge of his case.
“(In the past), it’s been felt that there’s a moral problem with transplanting people who are actively drinking,” Tapper explained. “A lot of (insurance plans) would come up with rules. Medicaid in Michigan actually said that you needed to be sober for two years before getting a liver transplant, so that was challenged in court, and it was said to be ‘arbitrary and capricious.'”
After that court case in the late 1980s, the sobriety requirement was dropped from two years to six months.
But Tapper pointed to research in recent years that showed patients who hadn’t been sober ahead of a transplant did just as well as those who had.
“There’ve been studies, particularly from France and Belgium, and then from across the United States, which show you can transplant people who were not sober, who showed up in the hospital super sick, and they would get terrific outcomes,” Tapper said. “So now we recognize, medically, that there’s no difference.”
Tapper believes most programs now determine transplant eligibility on a case-by-case basis or have specific transplant clinics dedicated to serving patients who are still struggling with the disease of alcoholism.
“I think by and large, people are saying, six months, that’s just kind of an arbitrary number,” Tapper explained.
BRIANNA’S MOM: SHE JUST BROUGHT A LOT OF JOY. SHE WAS A VERY KIND PERSON.
“She just brought a lot of joy,” said Tracey Hart, Brianna’s mom. “She would rather serve other people. She was a very, very kind person.”
The athlete and dog lover had felt like she had the flu, and her belly was swollen — signs of alcoholic hepatitis.
Like so many teens, Hart’s daughter first tasted alcohol at high school parties, but her genes put her at risk for alcoholism.
“She grew up in an alcoholic household. It wasn’t easy,” Hart said. “She didn’t think she was going to die at 25 from something she had watched other people do her whole life.”
It was after Brianna was sexually assaulted at 23, her mom says, that her drinking accelerated to at least a pint — often a fifth — of vodka a day.
“It was always in a Gatorade or a juice,” Hart said.
Brianna did manage to quit drinking for several months at one point before relapsing, and a doctor told her to stop drinking in the months before her liver failed.
“You know, yes, they said, ‘you should stop drinking,’ but they didn’t say, ‘you’re about to die,'” Hart said.
When Brianna was facing death in the hospital, she committed to sobriety for life.
But Hart said Henry Ford declined the transplant.
The health system later told Target 8 it has a responsibility to perform transplants “by generally accepted transplant standards.”
Those standards often required a period of sobriety pretransplant.
“As a trusted organ transplant center, we have a responsibility to perform transplant in a way that is generally accepted by society at large, by the transplant community and by generally accepted transplant standards. Most importantly, we place great emphasis on good patient outcomes. It is very difficult and sad for us as medical professionals when, based on nationally accepted protocol standards, we are not able to proceed with transplant. We use the same standards for transplant eligibility whether there is a potential living donor or not.”Henry Ford Health System
“The liver transplant team never evaluated her — came in, told her she was going to die,” Hart recalled.
Hart wouldn’t give up, and after six weeks of red-tape wrangling with Michigan Medicaid, Briana was flown from Henry Ford to California for a transplant evaluation.
A San Diego transplant center agreed to put Brianna on the liver waitlist, but during a procedure to drain her abdomen, Hart said doctors nicked an enlarged artery and Brianna bled internally.
Hart believes her daughter would have lived if she’d been granted a transplant five months earlier when her liver first failed.
“Brianna’s favorite movie was Lion King, and when I had to pull the plug, I played the Lion King soundtrack behind her because I didn’t want her to be scared. I wanted her to be happy, and she was such a little kid at heart,” Hart said.
CHELSEA’S MOM: SHE WAS SMART, ATHLETIC, BEAUTIFUL AND A HARD WORKER
Terri Oesterle-Klein thinks it was jealousy that made her daughter the target of high school bullies in Peoria, Illinois.
“Chelsea was smart girl. She was athletic. She was beautiful,” Oesterle-Klein said.
But when a gang of girls attacked Chelsea in front of a crowd the summer before her junior year, her parents had to make a difficult decision.
“Unfortunately, we had to pull her out. She could not go back to school. She was good in sports. She could have had a basketball scholarship. So, she had to give up that too, and that’s right when she was started drinking. Looking back, Chelsea was very good at hiding it,” Oesterle-Klein said.
Like Brianna Robinson, Chelsea was already at higher risk because of addiction in her family. And by her early 20s, she was drinking a pint of vodka most days.
“Putting it in Gatorade is what we later learned,” her mom said.
At 24, Chelsea was diagnosed with alcohol-induced liver failure after she got sick with what initially felt like the flu.
It would take a new liver to save her.
“I looked over and tears were rolling down her face and she said, ‘I just don’t think I’m going to make it, Mom,'” Oesterle-Klein said.
Oesterle Klein managed to get her daughter transferred to Northwestern University Medical Center in Chicago, which has a transplant center.
“She was young. She deserved to live. I mean Chelsea had said over and over, ‘I never want to drink again,’” her mom said.
But Chelsea had tried to quit drinking before.
She went to rehab at 19, but ultimately relapsed.
Oesterle-Klein says a doctor did tell Chelsea to stop drinking weeks before her liver failed, but he sent her home with anti-anxiety medications and vitamins.
“Every time she would stop, she would get sick. When you’re that addicted, you cannot just stop on your own. Addiction is a disease. It’s a disease of the brain,” Chelsea’s mom said.
Oesterle-Klein said Northwestern denied Chelsea a transplant.
Northwestern declined Target 8’s request for comment, citing patient privacy laws.
“I’m looking out over the city of Chicago and I’m just feeling like, ‘how can everybody just go about their life when my daughter’s up here dying?” Oesterle-Klein said.
A month and a half after her diagnosis, Oesterle-Klein said Chelsea developed an infection and Northwestern doctors said there was nothing more they could do.
“I just could not bear to see her in pain anymore … I just thought if she’s hurting, I’ve got to stop this, and that was it. The machines were shut off, and that sound of silence is the worst. The absolute worst,” Chelsea’s mom said.
In the years since her daughter’s 2013 death, Oesterle-Klein has honored her by helping other families and pushing for change.
“I think some doctors just think, you did this to yourself, and we’re not going to give you a second chance at life,” Oesterle-Klein said.
ANGIE’S DAD: “THEY SAID SHE’S NOT GOING TO MAKE IT”
Duayne Nelson says his 30-year-old daughter Angie Schmidt had no idea that several years of near daily beers and Jägermeister shots were killing her liver.
She’d felt fine at her wedding just three months before she was diagnosed with alcohol-associated cirrhosis, which was discovered when a scab wouldn’t stop bleeding.
“From a bleeding scab to liver failure was a shock,” Nelson said.
It was 2018 and a hospital in Angie Schmidt’s hometown of Nebraska had denied her a life-saving liver transplant because she didn’t have six months sobriety.
“They were going to make her as comfortable as they could, but they weren’t going to be able to do anything for her, and she was going to die,” Nelson said.
That’s when Angie’s sister found the Selkirk Liver Society online, run by Debra Selkirk, a Canadian woman whose husband died after being rejected for transplant due to alcoholism.
The organization had compiled a list of transplant centers in the United States that do not adhere strictly to the six-month sobriety standard.
Selkirk told Target 8 the three U.S. transplant programs she’d recommend for potential recipients who may not have a period of sobriety are University of Maryland, Oschner Health System in New Orleans and Houston Methodist.
When Angie’s brother called one of the programs listed on Selkirk’s website, the University of Chicago Medical Center, the chief of transplant surgery answered his own office phone.
“Just by God’s grace, (Dr. John Fung) picked up the phone. Didn’t get a voicemail. Didn’t get a secretary. Got him,” Nelson recalled. “He said, ‘if you can get her here, we’ll look at her. If she qualifies, we’ll get her on the list and worry about insurance later.”
That same day, a medical flight transported Angie to the University of Chicago Medical Center, where she was evaluated and placed on the waitlist.
Within hours, a liver that proved to be a perfect match was located.
It’s been three-plus years since Angie’s transplant, and she has not had a drop of alcohol since.
“I fought so hard to live that I’m not willing to touch that again, ever,” Angie told Target 8 in an interview via Zoom.
Angie said she enjoys life much more without alcohol.
“I do have those times that I want to drink, but I quickly remember why I don’t. I owe it to myself, my family, my donor, my doctors and everybody else who’s fighting the same battle not to drink,” Angie said.
She believes she’s one of the first patients to be granted a liver transplant even though she lacked a period of sobriety.
“I know they’re always watching me. I know they’re taking information from me. So, if I can be the best example, I can be, it’s totally worth it. If I can save one other life, it’s totally worth it … That six-month policy is just not fair. If they’d followed through with that for me, I wouldn’t be here. And that’s surreal to say. I would have been gone for three years now,” Angie said.
Angie has connected with — and thanked — the family of the man whose liver she received.
They keep in touch and talk often.
SUPPLY AND DEMAND
Still, other research has shown patients who are not sober before a transplant are more likely to return to high-risk drinking after.
“The issue is demand and supply of the organ, right? When someone gets an organ, someone else doesn’t,” Dr. Anjana Pillai of the University of Chicago Medical Center said. “You’re taking a precious organ that is somewhat scarce.”
In Michigan, 217 people were waiting for livers as of March 4, according to Gift of Life Michigan. A spokesperson for the agency told Target 8 that 228 livers were transplanted in the state in 2020.
Nationwide, three to four people die daily while waiting for livers.
Even if a patient has a live donor, like Duff did in his sister, they will not qualify for transplant unless they’ve been placed on the national waitlist.
Those placements happen only if the intended recipient has undergone a comprehensive evaluation to determine if they are likely to have a successful outcome post-transplant. Only then would a program consider putting a healthy, live donor at risk. There’s also concern that donors may feel pressured to participate.
To determine a potential recipient’s eligibility, programs consider factors like the patient’s insight into their alcohol use disorder, commitment to sobriety, familial support and ability to cover long-term medications.
Centers also look at whether the patient failed multiple rehabilitation attempts previously or knew he or she was damaging their liver but continued to use alcohol anyway.