Liver transplant policy fight brews in courts as patients await life-saving donations

Developments regarding the nationwide liver transplant allocation policy could impact Minnesotans waiting on a life-saving donation.

More than 13,000 people are hoping for a new liver, but according to United Network for Organ Sharing last year just over 8,000 were transplanted. That's led to some controversy on how to best distribute them.

Like most two-year-old girls, Maddie Stone loves taking care of her baby dolls. Unlike a lot of toddlers, however, she's become more familiar with her toy hospital kit because she often brings it to her many doctor appointments and surgeries.

“I was never not by my phone,” said Samantha Stone, Maddie’s mom. “I always had my phone near me because you didn’t want to miss that call.”

At seven weeks old Maddie was diagnosed with a rare liver disease and needed a new liver to survive. Her parents say waiting for that call was one of toughest times of their lives. They finally got the good news in November of 2017.

A partial adult liver was available, but was the wrong blood type. Doctors had to drain Maddie’s blood and then perform a 12-hour surgery. The transplant has come with a lot of complications and Maddie might need another liver.

Now, the rules of who receives a liver are on hold after several transplant centers in different states sued the United Network for Organ Sharing, a group that decides which patients receive organ transplants.

“The place you live should not necessarily negatively impact your ability to receive a liver,” said Dr. Srinath Chinnakotla, a liver transplant surgeon at the University of Minnesota Medical School and is on the board of UNOS

Dr. Chinnakotla says historically, transplant centers received organs donated in their surrounding communities, but opponents of that policy say it wasn't fair to areas with higher demand and less supply.

The lawsuit favored a plan that gives the available liver to the most severe patient nationwide, but a federal judge temporarily ordered that to stop and revert back to the geographic-based system that's more regionally focused. 

While the courts figure out the best way to expand access to organ donation, families like the Stones hope their child continues to receive top priority instead of an adult receiving a pediatric liver.

“It’s tough to see a kid’s liver go to an adult,” said Chris Stone, Maddie’s dad.

At the University of Minnesota program, about 60 percent of livers come within the state. Currently, there are 274 people waiting for a liver transplant in Minnesota including five children.