Business insurance

The Valley family fights against an insurance company and wins

Kessler Schutt is not your typical 11 year old girl. She is a self-taught artist who paints.

Sometimes it’s fruits and vegetables.

“Vegetables and fruits are important to me,” she said, “so I wanted to honor them.”

Other times it is an abstract piece. The one she likes to show off is a canvas in shades of blue and purple with the word “Live” on one side.

“It’s inspired to live how you want to live. And don’t let anything stop you because you only live once,” she said, describing the photo.

She has dozens of them, always with a message.

Schutt paints and speaks with the wisdom of someone much older. She’s the eldest of three children of Queen Creek residents Doug and Stacey Schutt, and they say her maturity is a trait she’s always shown.

“Even as a baby, even as a toddler. And it brings this huge personality to today,” her mother Stacey said.

But while his mind is rapidly maturing, Schutt’s body is not.

By the time she turned 8, her slow growth became more pronounced.

“That’s when she completely lost the growth chart,” Stacey said.

Bone scans showed Schutt had the bones of a 6-year-old.

At the time, she was diagnosed as a late bloomer and the family were told to keep a close eye on her size.

“They call it short stature. She (the doctor) thought that was what was going to happen with her. She would just be a little later to grow than her peers, but eventually she would catch up,” recalls Stacey.

But at 11, it seemed like she had stopped growing altogether. They went to another specialist.

Further tests revealed that Schutt had a cyst on her pituitary gland in her brain and was not producing enough human growth hormone (HGH).

For his family, finally having an answer was a relief.

“I mean, we were all very happy to finally have a reason and that there was a cure,” Stacey said.

HGH controls the growth of organs and tissues, it also helps regulate metabolism and blood pressure.

“It’s not just about growing her up,” said Stacey, who is also a nurse. “It helps his joints grow, it helps his tissues grow, it helps his bones grow, his organs, his cells. It’s a necessary hormone.”

The treatment is considered simple and effective: 1 dose of HGH per day.

Schutt will likely have to take it until she’s 19, but getting the medication she needs has been much harder than her family expected.

“She was in school and was so uncomfortable she had to call me and say my arm was on fire. It’s red, it’s up and it itches so badly,” Stacey said.

Two weeks into her daily injections, it became apparent that Schutt was allergic and the response was getting worse.

Their doctor believed that the drug’s preservatives were the cause and requested a preservative-free brand.

This request was denied by their insurance.

“So our next step was to appeal,” Stacey said.

This time, the doctor wrote a letter explaining Schutt’s reaction and why they needed the preservative-free version covered.

Refused again.

“They said the only medication they would cover would be the one she had already received and was having an allergic reaction to, so we had no choice but to pay out of pocket,” Stacey said.

Costing nearly $16,000 for an 84 day supply.

Stacey and Doug said they spent hours every day trying to reach someone to explain their situation, but could never get past the frontline call center workers.

“They don’t even give the last names of the call coordinators,” Doug said. “We don’t even know if it’s real people actually reviewing these calls.”

“To them, our daughter is just a piece of paper. You know, they don’t know her. They don’t know her story,” Stacey said.

Erin Bradshaw is with Patient Advocate Foundation, a non-profit organization that helps people with chronic or life-threatening illnesses access treatment. The organization was not involved in the Schutt family case, but told ABC15 that a case like theirs shouldn’t have been so difficult to fight.

“Some things are hard to appeal. And other things like this shouldn’t really be that hard,” she said.

But if it is, she says, patients have a right to fight it.

“The Affordable Care Act instituted a standard protocol for how calls should be,” she said.

Typically, Bradshaw said, patients get three appeals, with the final one being an independent, third-party review whose decision is binding.

But before you get to that final call, Bradshaw recommends involving your state’s insurance regulator and perhaps more importantly your employer.

“Because they are your benefit administrator,” she said. “I think it’s important for them to know that you face challenges in accessing your benefits.”

And that’s exactly what the Schutts did.

Doug’s company went to the insurance company representative on his behalf.

An exception has been approved and Schutt should be covered until the end of the year.

“We will fight. We will keep fighting,” Stacey said. “We are her parents, our job is to protect her and take care of her. And we will do everything we can.”