Woodbury family wins fight with insurance over son's treatment

WOODBURY, Minn. (FOX 9) - After seven months of battling their insurance provider, a Woodbury couple finally received approval for their son to receive a life-altering treatment.

In November, FOX 9 covered the story of 4-year-old Liam Schroeder, who was diagnosed two years ago with Duchenne muscular dystrophy, a rare genetic disorder mainly affecting boys that causes rapid muscle loss. At the time, his parents, Joan and Jon, were told he may not make it to his 30th birthday.

Hope came in July when Liam turned four, making him eligible for a new FDA-approved gene therapy called Elevidys. However, there was a problem: The Schroeders’ insurance provider, HealthPartners, denied coverage of the $3 million treatment on three separate occasions.

"The insurance companies are not expecting you to fight. They're expecting you to accept the decision that they make and not go any further, and we were not willing to do that ever," said Joan Schroeder. 

Joan and Jon, a scientist and a librarian, respectively, crafted a well-researched letter to a third-party expert, who reviewed the case and finally, ruled in their favor.

Early Monday morning, they brought Liam to the infusion center at Gillette Children's in St. Paul to have the treatment performed. They waited several hours for the treatment to thaw from its minus 76-degree freezer. Once it’s thawed, it must be used almost immediately. 

"We are giving Liam's body – his muscle cells in particular – a new instruction manual on how to make a protein that he's otherwise lacking," said Dr. Jamie Eskuri, a neurologist with Gillette Children's.

When the infusion began, the Schroeders knew their seven-month battle was worth every tear.

"We didn't take it for granted until we got here today," said Joan Schroeder.

Liam's neurologist, Dr. Eskuri, remains hopeful that the treatment will not only increase his life expectancy but also improve his quality of life.

"Some children develop new skills that they've never been able to do before. For instance, being able to run when they’ve never really truly been able to… Some kids do the stairs better. Some kids don't necessarily gain new skills, but they're able to do what they can do for longer before they fatigue," Eskuri said.

Liam’s parents are now daring to dream about milestones they never thought he'd reach and everyday actions other families take for granted.

"There's been all these other boys before us that haven't had this treatment, but they had to go through all these trials and tribulations, their families of course along with it. We kind of owe it to them a little, too," said Jon Schroeder.

There's still apprehension ahead as they'll have to monitor Liam for side effects and bring him back for weekly checkups. They want other parents to know that advocating for their children is worth every hour of waiting when it leads to great days like this.

"I'm sure, too, that a lot of people think, ‘Oh, we got this treatment. We're done.’ No. We just started," said Jon Schroeder. "This is the first treatment for Duchenne muscular dystrophy. It's not a cure. I don't think we'll stop until there's a cure."

HealthPartners sent FOX 9 the following statement: "While we’re not able to share specific information about this situation because of health privacy laws, our appeals process is one of the ways we work to ensure our members concerns can be heard and evaluated."