Lenexa family one of many battling health insurance companies because of loophole

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LENEXA, Kan. -- Right now in Kansas and Missouri, across the nation, there's an insurance loophole that's causing a painful problem for families.

If your child knocks out a few teeth in an accident, your health insurance helps cover the cost of fixing them. But if your child doesn't have teeth because of a genetic condition, your insurance company can refuse to help.

There aren't a lot of families that are affected, but those who are -- including  the Beveridge family from Lenexa -- say it's a massive burden.

Six-year-old Lainey is a bright spot in her family.

"She kind of puts color and life into our family," Jill Beveridge said.

Joe and Jill Beveridge adopted her from China four years ago when she was two.

Lainey Beveridge

"Honestly, the first time that we saw her picture we just knew," Beveridge said. "Yeah, we were like, 'That's our daughter.'"

They knew in advance that Lainey was born with a congenital condition, ectodermal dysplasia. People born with the condition have several symptoms, but some of the most common and most difficult: dental problems.

"You can have malformed teeth," Dr. John Fales said. "You can have teeth where the enamel didn't form properly. You can have missing teeth."

Their doctor warned them about what Lainey would face.

Most kids get baby teeth, but kids with ectodermal dysplasia are born without teeth or with misshapen teeth.

"She was actually born without her molars, with none of her front, top or bottom teeth," her mother said.

More people are familiar with dysplasia these days, thanks in part to child actor Gaten Matarazzo, who plays Dustin on "Stranger Things." He talks openly about his condition to raise awareness.

But most people don't know about one important loophole in the law that makes the challenges even harder: Health care insurance companies are denying coverage.

"If your child was in an accident, fell down at home and knocked out several teeth, their insurance company would say, 'OK, we'll help take care of the expense of covering that,' building a space maintainer or building an appliance to give them teeth back," Fales said. "But when you have a pre-existing condition, the insurance company says, 'Yeah. We don't have to help with that.'"

Joe and Jill Beveridge

Many of the insurance denials claim the dental work is cosmetic. But for kids with ectodermal dysplasia -- it's medically necessary.

"You want to jump on this quickly because kids who don't have teeth suffer from malnutrition," Jill Beveridge said. "They suffer from speech abnormalities. They can't chew and swallow their food well."

Other kids and families face the same problems that the Beveridges have been.

Their stories fill page after page on the website for the National Foundation for Ectodermal Dysplasia.

Like Lainey, they'll eventually need jaw reconstruction surgery, bone grafts and dental implants at a cost of around $150,000.

"I talked to families that their kids are already to that stage," Beveridge said. "They're having to choose between getting their kids teeth or sending them to college. I mean these are middle class Americans with the best health care in the world, having to make that choice."

Some insurance providers eventually pay, but the foundation said that battle can last months, even years.

So together they visited Washington D.C. last summer, asking lawmakers to sponsor ELSA, the Ensuring Lasting Smiles Act.

Jill, Joe and Lainey Beveridge with former Rep. Kevin Yoder

The bill would remove the loophole in current law that allows insurance companies to deny or delay complex restorative care, including oral care, due to a congenital anomaly.

Insurance companies stay in business by keeping costs down. But the Beveridges argue this won't affect that many people.

"Only about 3 out of 10,000 individuals are affected by this, so that's less than .03% of people," Beveridge said. "So this isn't going to break the bank on these insurance companies."

But it could transform their lives.

"You know, unfortunately, people like Lainey, they're a small number of people, and they have a very small voice," Fales said. "I think a society is judged by how it takes care of the least able to take care of themselves, and I'd like to think we have a great society that does that."

Lawmakers from other states introduced the ELSA bill last year, but it didn't pass before Congress concluded. The same lawmakers introduced it again in the new session earlier this spring. It has both Republican and Democratic support.

The next step is to get this bill into a committee for review. The foundation hopes to get it passed in the next year and a half.

If you want your lawmakers to vote for ELSA, find Missouri Congress members' contact information here and Kansas Congress members' information here and contact them.

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